A memorial fund provides a personalised and positive way of honouring the life of your loved one, giving family and friends a real sense of purpose in helping ERUK fund research that brings hope for the future.
You can support a memorial fund however you wish – from giving donations to taking part in sponsored events and organising fundraising activities. Our memorial fund supporters make a hugely significant contribution to our research funding through their donations and diverse range of imaginative fundraising activities.
Each year memorial fund donations are allocated to an individual research project or theme which we are able to report back on the progress of. Through our memorial funds we hope to help our supporters celebrate the life of their loved one whilst giving people a strong sense of the very real contribution they are making to advancing research towards a life free from epilepsy.
It is essential for those who loved James that his life is celebrated and that research into epilepsy is progressed; if even one family can be spared such a shocking and cruel loss our efforts will be worthwhile. The Bradfield family
SETTING UP A MEMORIAL FUND
To set up a fund in memory of your loved one, please email Jo, our Head of Donor Relations, or phone us on 020 3096 7887.
Lyndsay Marie Jones sadly passed away on 12 May 2020, aged 34.
“My daughter Lyndsay was under investigation by her neurologist. Her episodes were getting more frequent, her medication was increased, and she was getting symptoms in association with her cycle. She had her last episode at the start of her cycle during the night and fell out of bed. Lyndsay passed away from global hypoxia of the brain as a result of a major seizure. She will be missed by everyone and loved by all.”
– Christopher Jones, June 2020
To make a donation to Lyndsay’s memorial fund, please use the link below.
My brother Shane was diagnosed with epilepsy when he was 13. He didn’t suffer with seizures on a daily basis. However, he had them during his sleep so we were unsure of how many he may have suffered with. We were always told that he had mild epilepsy and that this was controlled by his medication which he took every day. His epilepsy did affect his confidence as a young man, he never would tell us it but we knew. When he was 17 he went on a Summer Trip with NCS that had to be cut short due to him having a seizure. He was making friends, enjoying the activities but it had to be cut short for him, he was so sad about this. He was starting to learn to drive but this had to be postponed. Epilepsy had a massive impact on him doing the things that most young people take for granted.Shane passed away from SUDEP and we knew nothing about it as a family, if we did we would have put so much more into place to support his seizures; such as equipment that would alarm us to him having a seizure during his sleep. Research towards epilepsy is important to us because if we can help spread awareness of the seriousness of epilepsy no matter how mild or severe it may be. Shane loved helping others, and although he isn’t here in person he would be so pleased that his memorial fund could help another family not go through what we have.
– Josie, Mum and Dad, October 2019
To make a donation to Shane’s memorial fund, please use the link below or visit the Just Giving page here.
Our daughter tragically and unexpectedly passed away at home the morning of 10th July 2019, aged 18, during a seizure.Bea had only ever had four seizures in the past – one in September 2017, which after many tests was given the all clear from and assumed as a ‘one off nocturnal’, and three in March 2019, all in the early hours of the morning, after which she was given medication for and a review date with a consultant for six months after.
My husband and I attended appointments with her, and at no point was there any warning that there was a potential to die during a seizure. Medical teams need to ensure patients are being given full information about their diagnosis, that their families are aware of the dangers and that patients are encouraged to tell their friends what to look out for and when to call for help. First Aid training should be offered to the parents/family/carers of patients diagnosed with seizures.
Bea gave birth to a beautiful daughter, Gracie-Mai Matthews, in December 2018, who remains living with us and her Great-Grandparents as requested in Bea’s will. In the short time that has passed, our daughter has missed so much of seeing Gracie grow and change, and everyone comments on how much she looks like her Mummy, she truly is a mini-Bea.
When Bea passed away, she had just finished her first year of A level Photography and was due to go back to college in September to continue with this course, and take up a BTEC in Psychology, while looking after Gracie. This showed her determination.
Our daughter was bright, funny, lit up a room with her smile, and gave the best cuddles. We miss seeing and hearing her every day, telling each other about our days at the dinner table, planning dates in the diary together, singing in the car at the tops of our voices. The list is endless. I miss not being able to tell her I love her unconditionally and how proud I am of her. Now we continue for her daughter.
– Alexandra Matthews-Kilhams and family, October 2019
To make a donation to Beatrice’s memorial fund, please use the link below or visit the Just Giving page here.
Sophie, or ‘Droz’ to her friends, was a beautiful, talented and enthusiastic girl. She was naturally artistic and touched the hearts of so many. During her studies for TV and film production at Warwickshire College, Sophie suffered her first epileptic seizure just three weeks before her 17th birthday. Soon after, juvenile myoclonic epilepsy was diagnosed. On the evening of July 2nd 2015 at the age of 18 years old, Sophie went for a walk along a canal towpath near to the family home and never returned. Whilst walking, Sophie had suffered an epileptic seizure and had fallen in and drowned.As Sophie’s parents we just felt complete and utter devastation at the loss of our child. There are simply no words, just a void, endless, painful and unbearable. Sophie’s death came on the same day that she received news of achieving the required college grades to study TV production at Bournemouth University. In fact, her final college results were such that she was awarded an Academic Excellence Scholarship, which she was never able to benefit from.
The first year without Sophie was particularly painful. We decided to raise money for epilepsy research by completing a sponsored walk on the first year anniversary of Sophie’s death. The walk took place along the same canal where Sophie lost her life and included the very spot where Sophie was found. We invited those people whose lives she touched, to walk with us and raise funds in her name. A total of 96 walkers took part and raised just over £6,000. Other generous donations have taken the total in Sophie’s Memorial Fund to just over £15,000 to date.
We still miss Sophie’s smile every day and the world seems a little darker without her bubbly personality and infectious giggles to fill our lives, but that will never change. What we can help change however, is to prevent similar tragedies by fundraising for epilepsy research; we can then feel that something positive has come out of losing our own beautiful daughter.
– Ann Reilly and Steven Drozdzik, January 2019
To make a donation to Sophie’s memorial fund, please use the link below.
Sebastian’s family have set up a memorial fund to support the work of Epilepsy Research UK. Donations given in memory of Sebastian will support our next research grant awards. New research offers the very real possibility of further breakthroughs in understanding the causes of epilepsy and developing new therapies to help transform the lives of those affected by the condition.To make a donation to Sebastian’s memorial fund, please use the link below.
I would like to start a memorial fund to assist with the research into why SUDEP (sudden unexpected death in epilepsy) occurs and to work towards a cure.Following the sudden tragic death of my 18 year old daughter Enya, due to SUDEP in the early hours of 22nd October 2016, I wanted to raise awareness of this debilitating and life threatening condition. Enya had just started a three year degree in art / graphic design at university.Epilepsy is one of the most common neurological conditions. Over 600,000 people in the UK have a diagnosis of epilepsy. 32,000 people in the UK are newly diagnosed with the condition every year. 1,100 people die as a result of epilepsy around 600 of them are young men and women under the age of 30. SUDEP is associated with epilepsy and leads to sudden death. From current research it is thought that it happens when a seizure stops the heart or breathing for a certain length of time. The heart may stop for several seconds.
Enya was diagnosed with nocturnal epilepsy at the age of 14. Enya was a happy, loving, intelligent, wacky fun girl with a great sense of humour, a natural born artist and graphic designer, loved by all and greatly missed.
I believe that research is essential if we are to find safer new treatments with no side effects or one day a cure or a greater understanding of the condition that may lead to those things. By supporting Epilepsy Research UK we can help provide funding to help with the research that will help to change lives. This is something we can all do together.
– Orla McDonnell, November 2018
To make a donation to Enya’s memorial fund, please use the link below.
On 20th August 2018 James Bradfield died suddenly and unexpectedly, aged 29, following a seizure whilst on a sailing holiday with close friends.James had been married to Sarah for just five weeks and is greatly missed by her, his parents, siblings, and numerous friends. He was gentle and kind and is remembered by all who had seen him recently as a man who was, truly, the happiest he had ever been. His wedding provides vividly warm memories of his great joy and keen sense of humour. He was enormously excited about the future and all of the wonderful possibilities it was likely to hold.
James was diagnosed with epilepsy at the age of 20 while studying at university. He was helped by the medication he took and by the support he received at Addenbrooke’s Hospital in Cambridge. His demonstrative bravery and strength in the face of his epilepsy diagnosis, and its associated seizures, was extraordinary. It is essential for those who loved him that his life is celebrated and that research into epilepsy is progressed: if even one family can be spared such a shocking and cruel loss our efforts will be worthwhile.
This memorial fund serves as a vehicle through which we can continue to celebrate James and support much needed research in his memory.
– The Bradfield family, November 2018
To make a donation to James’ memorial fund, please use the link below.
Shannon was 21 when she passed away unexpectedly from epilepsy on 8th September 2017.She was such a beautiful person. A true joy to be around. Everyone that knew her loved her and were devastated by the news. She was vibrant and happy, a true sweetheart who was naturally supportive of others with a depth of caring that is unfortunately very rare in today’s world. People found comfort in Shannon’s company and would often ask her for advice due to her kind and genuine nature. She was always willing to help. She was very positive and was a good influence on others.
Diagnosed with epilepsy at the age of 18 months old Shannon refused to let it dictate her life or outlook. She lived the life she loved and would not let it define her. Shannon was always naturally athletic and fell in love with dancing at a young age. She competed in and won national competitions as part of a dance group and later turned her strengths to competing in a physique competition and later powerlifting and Crossfit. She was just days away from competing in the Hampshire open.
At work Shannon excelled at jobs involving contact with people and became successful in sales, selling firstly insurance and later events membership for the famous Farnborough Airshow. She was in the prime of her life with everything to look forward to.
We would like to raise money in memory of Shannon and to help other families and individuals with epilepsy in hope of saving others from a similar situation. We know Shannon would support us and be proud of this effort. Please help us to replace some of the goodness that left the world with her.
– Rhona Rance, April 2017
To make a donation to Shannon’s memorial fund, please use the link belowor visit the Just Giving page here.
Elena Jane Bryan, known as ‘Beej’ to her family and friends, died on February 28th 2018 aged 40. She had had epilepsy for thirty years. Her final seizure happened while she was on her bed, talking to her Mum on the phone. Her airways were compromised during the seizure, and she didn’t recover. The emergency services were fantastic and could not have done more.Despite the problems associated with the worst of seizures, Elena refused to let her epilepsy define her as a person. She worked part time as a Nanny, having trained at the Princess Christian College in Manchester. She was loved and valued by everyone she worked for, and especially by the family she was with for fourteen years, helping to care for four girls throughout their schooldays.
As well as working, Elena did volunteering, and had a great empathy with people with mental health problems. Her kindness led her to give food and drinks to disadvantaged people who lived on the streets, as well as volunteering on projects when she could.
We as a family, want to keep her memory alive as being a wonderful daughter, sister, niece, cousin, and friend, by raising vital funds for research which will help others.
Beej was always pushing her boundaries. A born adrenalin junkie, she had bungy jumped in New Zealand, sky dived, and trekked in Nepal, Peru, and Vietnam, to name just a few of her hair-raising activities! She also travelled to Zambia with the ‘Book Bus’, to help children access books and learn to read. She loved the theatre, cinema, and going to concerts. Her music was very important to her, and she had learned to play both the clarinet and flute during her time at school.
We will remember Beej for her lovely smile, her giggles, her determination, her bravery, and her kindness and generosity. “There are plenty worse off than me”, she would say… Her final act of generosity was her organ donation which gave the most precious gift of all to so many, the gift of life.
– Jane Paterson (Aunty Janey), April 2018
To make a donation to Elena’s memorial fund, please use the link below.
Hector was 13 when he had an epileptic seizure just a few metres away from us but in a different room. We don’t know exactly what happened but when we found him some minutes later he wasn’t breathing.Hector was diagnosed with absences when he was 10 and aged 12 he had his first tonic-clonic seizure. We never managed to control either his absence seizures or his epilepsy with drugs. He was on his fourth set of medication, but nothing had worked. So, without us really thinking about it he did fall into a higher risk category for SUDEP, a young male with uncontrolled seizures. But at his worst he had a one fit a week and sometimes there were gaps of 4 or 5 weeks.
So, we took the view that we couldn’t let epilepsy define his life; he certainly didn’t want it to. As a family we enjoy anything to do with water – Hector and his brother Rory became keen dinghy sailors and windsurfers – the more wind the better. They loved learning to water ski this summer and donutting behind their uncle’s rib. We spent our summers sailing and on beaches in Scotland and Devon. Hector loved playing in the surf – the bigger the waves the better.
Hector had two great passions: art and climbing hills. When he painted he was totally immersed, totally focused and happy. All that mattered was the painting he was doing. Walking up a hill he was always way out in front. He was a mountain goat and found it very frustrating that we couldn’t keep up with him. His friends and family were well used to seeing him charging off into the distance and his school teachers devised many ways to keep him with the group. He also loved playing rugby, cross-country running, skiing and playing the trumpet.
He will be remembered for his beaming smile, twinkling eyes and his wicked sense of humour – he loved winding up his family. His friends will remember him for always being positive and making them laugh.
– The Trafford family, January 2018
To make a donation to Hector’s memorial fund, please use the link below.
Megan was 15 years old when she was unexpectedly taken away from her family on the 27th December 2016.”Megan was diagnosed with epilepsy when she was 8 years old. We are fundraising in her memory but to also make people aware of how dangerous the condition can be. We do not want this to happen to any other families and more research needs to be done so we are wanting to raise as much money as we can for this cause.”
– The Robertson and Holman family, January 2017
To make a donation to Megan’s memorial fund, please use the link below or visit the Just Giving page here.
Caspar Gaze died aged 22 as a result of an epileptic seizure on 23rd April 2017. He leaves behind a family numb at his loss.Caspar had a huge appetite for life. The weeks before his death were amongst his most fulfilled. He loved his new job working for British Airways in London. He loved his new flat and living in the docklands of the East End. Caspar was set for life. He achieved all this entirely independently. He had taken himself off to England when he was 16 to complete his education. Through his own efforts and hard work he got a series of jobs all leading to his final job. Every time he got knocked down, he picked himself up and started again. He would not allow himself to be held back by his epilepsy.
Caspar and his twin brother Milo were diagnosed with epilepsy in 2003. At first it was occasional absence seizures, but these became more and more numerous as they grew older. In their early teens both boys started having grand mal seizures. Despite seeing doctors in England, France and USA, their seizures were never properly controlled.
Caspar and Milo were lucky enough to know the freedom of growing up in the French countryside, wandering all over the place, camping in woods, swimming in lakes, but epilepsy cast a grim shadow over their childhood. Endless hospital visits, the fear of seizures that might happen at any moment and the creeping consequences of those seizures.
We would really like something good to come out of all this; so we are raising money for Epilepsy Research UK in memory of Caspar. Hopefully one day soon, the researchers that we help fund will make the necessary breakthroughs.
– The Gaze family, January 2019
To make a donation to Caspar’s memorial fund, please use the link below.
My son Mark was 36 yrs old and leaves behind an 8 year old son. Mark, tragically passed away during a seizure on 10th June 2017. His cause of death was Status Epilepticus. He fell against the bathroom door and was trapped behind it. Sadly, the medics could not get and administer CPR in time. It was shocking and is devastating. I am heartbroken…Mark was diagnosed with epilepsy just over a year ago. It was a life changing illness for him. He had to give up driving, which he missed immensely. Consequently, his social life changed dramatically. He did become despondent and for a short time, he felt isolated. It was sad to see a very gregarious and fun-loving person change. The medication also altered his demeanour – his nature was pretty laid-back, but for a time he suffered mood-swings. Because of this, that particular medication was stopped.His seizures were quite traumatic to witness as they were severe. He was afraid to go out alone with his young son because he was fearful of having a seizure when they were together, as was once the case. My little grandson was distressed to say the least. His dad was taken to hospital with a head injury again on that occasion.
Mark worked as an auto electrician and was highly respected by his colleagues and manager alike. He was very good at his job and enjoyed it, although it was difficult sometimes and at one time he had to go down to three days a week. I begged him to give it up totally, but he was reluctant, as he did not want the illness to defeat him. He was very courageous and he never moaned. He had a number of seizures at work, which very often resulted in a trip to the hospital. More often than not he suffered head injuries when falling, which was upsetting. He suffered so much during this last year or so. He went through hard times but, tried to lead as normal a life as possible.
Mark recently met someone new after his previous relationship broke up, more or less due to the stresses of his illness. Things were looking brighter for him and he became positive about his future.
His birthday was May 17th. Upon collecting his things recently, I found the birthday card I had sent him. In it, I wrote that I thought his life would change for the better. His seizures were becoming less – one a fortnight – and he had met a new person and they had booked a holiday. He was looking forward to the summer. He used to play airsoft with friends and he had started doing that again.
Little did I know that three weeks later, the card I had sent him, would be the last birthday card I would ever send to my son.
I never thought that the epilepsy itself would kill Mark, if anything I was more concerned about the continual head injuries he sustained. He had started wearing a rugby skull cap at work, which was highly amusing for his workmates. He loved a joke and had a great sense of humour.
I feel so lost and I keep asking why?
After reading the memorials on this site though, I now know I am not alone. We have all lost to this heart-breaking condition. Hopefully, with medical research, SUDEP or Status Epilepticus will become tragedies of the past.
A light has gone out for many people now that Mark has gone.
We miss him and he will always be near in spirit xxx
– Kay & Colin Westwood (Mum and Stepdad)
Nan Patty & all his many friends and family
To make a donation to Mark’s memorial fund, please use the link below.
Rob was diagnosed with epilepsy in early 2015 after having had two seizures. At that time he was in his second year, studying at De Montfort University, Leicester, for a degree in Computer Science.From the outset Rob refused to let his epilepsy rule his life and he continued to live his life to the full both at university and at home. During his time at university he worked a year out in industry at a local IT firm in Leicester and started doing lectures for his local PHP community where he made a great many friends.
From the time he was diagnosed with epilepsy he and I (his mum) were aware of SUDEP as his Consultant had mentioned it to him and we made sure we knew what this meant. We didn’t worry about it though and we put it to the back of our minds – after it all it was never going to happen and his epilepsy seemed well controlled…
On Saturday 7th January 2017 we were due to take Rob back to university to finish his final year of his degree and we were all making plans for his graduation in July. Unfortunately we never did take him back to university as late on that morning Rob died – the cause of his death being confirmed as SUDEP. He was only 22 years old.
Since that time we, as his family and friends, have been slowly trying to piece our lives back together, all the time knowing that Rob will never be a physical part of those lives again. At his funeral many tributes were paid to him, and two of his best friends, Jonathan and Charlie, described him as funny, kind, a true gentleman and loved by all of his friends – I can’t think of a better tribute to him.
Losing Rob has left a huge hole in the lives of all of us and we therefore wanted to set up this memorial fund in order to allow the further progress of epilepsy research in the hope that at some point in the future no other families will need to go through this. Epilepsy research is incredibly under funded and has little media attention and we hope that in raising funds we can start to change that a little at a time.
– Rachel, Graham and family (including Rob’s second family!), April 2017
To make a donation to Rob’s memorial fund, please use the link below.
Oliver James Osborn was born 2 April 2013 and right away we knew he was going to be a special little boy. On arrival the nurse noticed Oliver was doing some abnormal movements, the nurse thought it may be the stress of birth and assumed they would stop. Day 3 of life we took Oliver to the hospital as it was getting worse and he was immediately seen and sedated due to having seizures. Immediately bloods were taking and tests where started to find out why. Every day Oliver was sedated due to having numerous seizures and we started many different meds as they were not working. Test after test came back normal. It was then our consultant said we are going to do genetic testing. The wait for this seemed like a life time.We were trained in the hospital to look after Oliver giving his daily meds and feeding him through his NG tube and later through his peg. We were trained on how to suction and give oxygen when needed. And after 6 months of being in hospital they finally discharged us and let us go home to be a family. During this time we had a lot of appointments with the doctors, having check ups and extra tests done. We also travelled to London from Peterlee to see an epilepsy specialist.
After a year of waiting the test came back and confirmed Oliver had migrating partial epilepsy in infancy, a terrible disorder. We instantly broke down, although we had been told this is what it was going to be, we always tried to have some hope as there was no cure. No meds slowed down or stopped Oliver’s seizures and the Ketogenic diet did not work. He was sedated up to 4 times a day and would still have over 100 seizures a day. He was an absolute inspiration to everyone he met and more, fighting this terrible disorder every day with no break.
Oliver was loved dearly by his family, his Mam and Dad miss him every day, he was a little brother and a big brother and his brothers loved to be around him. Sadly Oliver lost his battle with epilepsy on September 19th 2016. Out of the blue he struggled to breath during seizures and he was blue lighted to the hospital for the first time. He had a nice settled night and came off oxygen, however in the early hours of the morning he started to have seizures again and struggling to breathe and he sadly passed away. He was a true hero who fought every single day of his life.
Rest in peace Oliver we love you and miss you every day x
– Ricky, Danielle and family, January 2017
To make a donation to Oliver’s memorial fund, please use the link below or visit the Just Giving page here.
Jill was just 41 when she passed away one night after enduring several seizures in succession. Her husband and son tried in vain to save her, as did the paramedics. I had to call my parents to tell them their daughter had died… it was singularly the worst night of my life. Words cannot explain how we all felt in the days following, it seemed like we were looking through someone else’s window, things like that don’t happen to us… But sadly it was happening.We are a close family, Jill and I were married to brothers so we shared the same family and in-laws and saw each other very often. The impact on both sides of the family was one of total devastation. We have epilepsy on both sides, my sister-in-law has suffered it since she was a young girl and my young nephew was diagnosed a few years ago, the most worrying thing is his seizures seem to mimic how Jill’s were. So this is why we are involved in raising money and awareness, we don’t want this devastation in our family again; we don’t want it to happen to anyone else’s family either.
– Joyce Meads and family, January 2017
To make a donation to Jill’s memorial fund, please use the link below.
Craig passed away suddenly on 28th September 2016, just shy of his 24th birthday on November 12th. Craig was much loved by everyone who knew him and was a loving father to his beautiful 3 year old daughter Laila. Craig was only beginning to come to terms with his life changing condition after being diagnosed in 2015, but he was determined not to let it hold him back. He continued playing with his football team and had finally found his own flat.
After becoming a father in 2013 Craig devoted his life to Laila and was so proud of her and all her achievements. Sadly he missed her winning the dancer of the week trophy at her dance class (which she had berated him for weeks about wanting to win), but we know he would be looking down and beaming with joy for her.
Unfortunately for Craig and our family, there is no known cure for epilepsy and we must live each day without him. Our only hope is that this fund can go somewhere towards finding a cure for epilepsy and spare another family from enduring the pain that we’ve went through.
– Michael Brady, November 2016
To make a donation to Craig’s memorial fund, please use the link below.
Simon was 28 years old when he died from SUDEP. Simon had epilepsy from the age of 12. Despite this he never let it get him down or stop him from doing activities that he enjoyed. He was a keen mountain biker, tennis and rugby player, and enjoyed walking.Simon was a very social person. He had a wide circle of friends in all corners of the UK and in other countries. His involvement with Epilepsy Research led him to meet some wonderful new friends and he was always willing to share his experiences with others. For others living with epilepsy, listening and talking to Simon was of great comfort and strong friendships were formed. Simon was a generous and kind man who always wanted to give back to society, which he did by working for various local charities. Wherever he went he left his mark and people did not forget him.
Simon’s epilepsy did not respond to medication and in 2007 he agreed to become a part of a research programme at Southmead hospital in Bristol which was working to improve the lives of young people, through developing a better understanding of the complexities of epilepsy. Simon had surgery three times and following his last surgery in February 2016 Simon experienced a reduction in seizures.
Sadly, on 01/10/2016 Simon unexpectedly died from a seizure at home. Those who were told of his death were shocked; the medical team at Southmead hospital who had worked so caringly to improve Simon’s epilepsy found it hard to believe as they felt he had made good progress. Simon’s neurologist and surgeon said that over the years they had leant a lot from working with Simon, which had helped other people with epilepsy. As a family, we feel this work should carry on in memory of Simon, but more importantly to continue to raise money for research into epilepsy.
One way of doing this is to donate to Simon’s fund. So please donate what you can to the memory of Simon who was a wonderful, generous, happy and selfless human being.
– The Stickland Family, November 2016
To make a donation to Simon’s memorial fund, please use the link below.
No money donated to Simon’s memorial fund will be used in research that involves animals in any way. All money raised via this fund is guaranteed to be used for research not involving animals.
“Being a true Gentleman never goes out of fashion”
Owain was a strong but very gentle, kind person who cared so much about others, more so than himself. He was very much loved, admired and respected by all those who had the good fortune to meet him, especially his loving and devoted wife Victoria, his Mum and Dad, Ann and Peter, and his sister, Nerys.
He was a tireless defender and protector of those he felt were in need and the people he loved; he was always ready with a sympathetic ear and a hug whenever needed. He despised injustice wherever he saw it and fought against it whenever and however he could. This included giving to charity, helping and talking to the homeless and campaigning and raising awareness for social justice and equality.
Owain struggled with epilepsy following his diagnosis later in life, particularly with coordination, memory, focus and creativity which in turn significantly affected his mood, although he fought very hard to control and not show it; he did not like to ask for help. He was also affected by numerous types of seizures and migraines on a regular basis and a number of side effects, including insomnia, resulting from his various epilepsy medications. Despite all this he was always cheerful and funny and worked hard to provide for his wife, their beast of a cat Nemo and to attain his goals and dreams. Owain and Victoria were devoted to each other, everything they did was for each other’s benefit and with other people in mind.
Owain and Victoria were aware that funding for epilepsy research was not a priority area for the Government and often lamented this fact. Owain would be very pleased to know that donations were being made in his name and to know that something good could come out of his untimely passing, which will also be a great comfort to his wife and family.
Please give generously in memory of this gentle giant with a heart of gold, a very special soul, in the hopes that further funding and research can benefit others whose lives are affected by epilepsy.
– Victoria Thomas, October 2016
To make a donation to Owain’s memorial fund, please use the link below.
“Gill was my beautiful wife and my high school sweetheart, a young 44 year old who loved her family so so much. Gill had the most infectious laugh and smile that lifted the darkest day whilst taking everything in her stride. Everything seemed perfect, and then it was all gone to what can only be called the light switch effect. The heart break of losing Gill is so monumental I can’t find words to describe the loss.
Life without Gill is unbearable and the hole left is immense, this will never be filled within my heart and the hearts of our three children. Gill was so proud of our three children, Aaron 24 years, Holly 20 years and Lewis 13 years old. The mention of our children would often see the biggest smile on Gill’s face as she loved them all so dearly, often acting like a big sister as well as their mum.
Gill was the youngest daughter to Peter and Jean and younger sister to Louise. Gill’s infectious personality was widely felt by so many, Gill held her friends in such high regards and treated them as extended family.
Gill developed epilepsy through contracting glandular fever in her late teens, after close medical care the seizures became less frequent. As the years went by Gill had less and less problems with epilepsy. Gill lived a normal life, but had regular check-ups to ensure things were fine. Many years passed without any seizures leading to a clean bill of health (as close as possible ). We were never aware of SUDEP until the devastating news was given for Gill’s cause of death.
With the school holidays just starting, we had made the decision to have a surprise holiday abroad with the kids whilst enjoying a relaxing weekend at our caravan with our friends. A BBQ was planned on Saturday 23rd July as the weather forecast was perfect. With Gill relaxing in bed, I headed off to the supermarket to buy provisions for the BBQ. Upon my return our youngest son greeted me with tears streaming down his face saying mum had collapsed. I rushed in to the caravan to find Gill unconscious, I started CPR and contacted 999. The emergency services and the air ambulance arrived very quickly and tried in vain to save my world. I will never forget the spine chilling words, “Dave we would like you to hold Gill’s hand and say goodbye, we have lost her.”
To break the news to your children is the most harrowing ordeal I have ever encountered. We still struggle to accept that Gill is not here. Words can’t describe how empty life has become without her. Whilst I lay beside my beautiful wife for the last time, I promised that I would look after our kids and stay strong, I will not lie to anyone this is heartbreakingly hard every minute of every day. Gill taught me how to love and laugh and to open my heart and cry. After reading the testimonies on the memorial page we felt this would be a fitting tribute to remember such a remarkable beautiful fun loving wife, mother, daughter and sister.
We hope the memorial fund will inspire people to raise monies for research and the possibility of finding a cure.
Thank you for reading.
– David Birdsall, September 2016
To make a donation to Gill’s memorial fund, please use the link below.
Celia was 25 and a loving wife and mother to two small children when she passed away in her sleep after a seizure in May 1977. She had epilepsy all her life and her medication meant her seizures were generally controlled. She loved dancing and listening to music and was determined to not let her epilepsy hold her back from doing the things she wanted to do.In the two years following the birth of her daughters, her seizures were more frequent and uncontrolled due to difficulties in trying to get her medication back on track to the right levels. Her passing had a devastating impact on her family and friends as it was so sudden and unexpected.As a family we have set up the Celia Wixey Memorial Fund to raise money to support researchers in their efforts to better understand this condition, how it can be prevented, and how to stop Sudden Unexpected Death in Epilepsy (SUDEP) from affecting the lives of others.”– Sarah, Rachel and Tony, September 2015
To make a donation to Celia’s memorial fund, please use the link below. Donations can also be made via www.justgiving.com
John shared his immense kindness, gentleness, and intelligence with all those he met, spreading good humour and joy.With his great strength and determination he overcame two cancers and an iatrogenic heart attack, but since epilepsy was diagnosed 3 years ago his condition deteriorated steadily, culminating in his death on 22/2/15.
Epilepsy is the most common serious neurological condition in later life, after stroke and dementia. Almost a quarter of epilepsy diagnoses are from those over 60. One in three epilepsies are, like Dad’s, uncontrolled by medication. Seizures are a bit like an electrical power surge in a circuit without a fuse to protect it – they “blowout” neural components involved, causing enduring damage. Dad’s major seizures occurred every 6-8 weeks over his last 3 years, requiring hospitalisations and reducing both the quantity and quality of his life.
Dad faced his frequently changing situation with remarkable, yet typical, courage and stoicism. He would probably have hated us touching on the darker side of his fading light – he was never one to complain or to dwell on depressing things, sidestepping his own problems to work on maximizing the happiness of those around him. We should most certainly focus on the brilliance of his light and remember all the many, many good times. Yet, if we can also highlight the, perhaps, under-appreciated severity and under-researched disease of epilepsy, this would seem like the time and the place. We hope you will join us in funding research to fight this condition.
– Jane & Mark Harwood, March 2015
To make a donation to John’s memorial fund, please use the link below or via uk.virginmoneygiving.com where you can also leave messages for John’s family.
Ethan passed away on the 2nd May 2014, aged 15 months, after having a seizure linked to his epilepsy. Since then his parents Sue and Gavin Carter, along with their family and friends, have been doing everything they can to raise awareness and fundraise for Epilepsy Research UK and Dravet Syndrome UK.
To make a donation to Ethan’s memorial fund, please use the link below.
Garrett ‘Buzzy’ left us in February 2014 while seizing in his sleep. This fund is dedicated in his sweet memory. Buzzy was a friend to everyone he met and shared love to each person he knew. No matter what kind of mood we were in Garrett could cheer us up. Garrett was born with a rare genetic trisomy which meant he was unable to verbally share any of his thoughts, feelings and ideas with us: someone poignantly truly stated that he spoke volumes without speaking a word. We are all very blessed to have shared Garrett’s 23 years and hope that his memory will live through this fund and continue to touch others as he did us. – Michael May, December 2014
To make a donation to Garrett’s memorial fund, please use the link below.
Donald was evacuated in WWII from Birmingham to a small Northamptonshire village, where his mother had family connections. His epilepsy began, we believe, when he joined the Navy for National Service. From then on it blighted his life as his seizures and blackouts were misunderstood as a mental deficiency. The medication he was prescribed in the 1950S, phenobarbitone, was very rudimentary and did not prevent him from having falls. Because of it he never married and lost his job as a painter and decorator-a trade in which he followed his father. After his parents died in his thirties he lived alone. Fortunately , his sister, Peggy, lived in the same village and supported him practically and emotionally. But otherwise he remained socially isolated.
Regrettably Donald did not benefit from any advances in treatment for epilepsy. No GP explored alternatives or revised his prescription. Indeed, as he became less capable of telephoning for renewed prescriptions he would have been without medication but for his sister. It is possible that his moods and erratic behaviour were related to unimaginative medical treatment. It was only in the last four years, and due to being detained because of advancing dementia, that more appropriate medication was prescribed. Despite these disadvantages Don did live to 78. Our hope is that research into the treatment of epilepsy will lead to a superior quality of life for others and honour his history and memory.”
– Meryl Thompson, December 2014
To make a donation to Donald’s memorial fund, please use the link below.
John and Nancy Bettelley from Blackheath, south-east London, knew that when they lost their son Andrew, 29, following a nocturnal seizure in March 2007, they would have to do everything they could to stop another family suffering the same tragedy.Andrew had been diagnosed with epilepsy when he was 11, and although there had been difficulties getting his medication right, his seizures were largely controlled. Andrew lived independently, near to his family home. John recalls: “Andrew was a happy and well-liked young man. He worked, liked socialising and was very keen on his tennis. We couldn’t have predicted what would happen. Despite ongoing research, the risk factors of a person dying from epilepsy, whether from SUDEP or other epilepsy-related causes, are only partly understood and not necessarily well communicated.”
Andrew’s death has been devastating for John, Nancy and his sister Nicole. They decided that they wanted to put all their efforts into supporting research into epilepsy, and set up the Andrew Bettelley Memorial Fund with Epilepsy Research UK. Over the last seven years they have fundraised tirelessly on behalf of the charity, raising many thousands of pounds (well over £56,000 at the last count) helped by the tremendous support they have received from a great number of family and friends. This has contributed to a dedicated memorial fund research project each year.
“For us, research is the only way to go,” said John. “There have been significant medical advances in helping some kinds of epilepsy; gene therapy is very promising, and we must continue to look for more breakthroughs which will help prevent the same tragedy happening to others.”
John and Nancy have fundraised through activities such as: tennis tournaments; bridge days; Christmas raffles; lunch and drink parties; concerts; dinner and entertainment; hat, handbag and jewellery sales; National Epilepsy Week activities; sponsored school readathon and marathon entries; supermarket collections. They also supported ERUK on the 2011 Gala Ball committee, and Nancy is a regular ERUK volunteer for Cards for Good Causes .
They take great care to organise activities that their friends will enjoy, and many have become much looked forward to annual events. They also collaborate sometimes with fundraisers for other locally supported charities, pooling resources and sharing the proceeds – a great way to spread the workload and attract a wider audience. In all they do they seek to raise awareness and understanding of epilepsy in their local community.
Our thanks go to John and Nancy for their fantastic support of our research and for continuing to look ahead with their fundraising, and to their family and friends for their continuing generosity.
To make a donation to Andrew’s memorial fund, please use the link below.
Matthew was 43 years old when he suddenly passed away from SUDEP, on the 29th June 2014, a day that has changed our lives forever. Matthew suffered from epilepsy and loss of peripheral vision following a trauma when he was 20 years old. He had few seizures in the beginning but in recent years they became more frequent, more so when he was asleep.Epilepsy never stopped Matthew doing anything, his outlook on life was “I’m not going to worry about the things I can’t do but get on with the things I can, and live life to the full”. Matthew certainly did that, he was a fanatical golfer playing every weekend, and made some great friends doing so. Everywhere he went he knew somebody, he loved people and would do anything to help others. People who knew Matthew always mentioned his smile and his cheeky personality. He had some great holidays with his sister in the last two years and has left her with some wonderful memories.
His beautiful daughter Charlotte of 14 years is now left without her Dad. So we have set up this memorial fund to try and help find a cure for this terrible unpredictable affliction. There is still so much to learn about epilepsy so every penny counts.
We unfortunately cannot help Matthew now, but we can certainly try and help other families not to experience the loss and grief we have, and are still enduring.
– Judy, Paul & Amanda Walden, August 2014
To make a donation to Matthew’s memorial fund, please use the link below.
Amelia was our first and only child, born on 22nd November 2010. Loving, energetic and polite, she was growing into a beautiful and intelligent little girl. From the age of 14 months until she sadly passed in the early hours of 3rd April 2014, she suffered around 40 fits. Some would last a few minutes. Others happened in batches, and lasted up to a couple of hours. All were passed off as febrile convulsions and epilepsy was always dismissed, despite a long line of epilepsy in the family. Her post mortem revealed she had suffered an epileptic seizure which caused her death. It breaks our hearts to know if she had been diagnosed and medicated, she may still be here today. So now we would like to help this wonderful cause in the memory of our beautiful Princess Amelia.– Ashley and Lisa Tong, July 2014
To make a donation to Amelia’s memorial fund, please use the link below.
We lost our darling boy aged 19 to a massive seizure on Wednesday 16th October 2013. Edward, or Eds as he was affectionately known , not only suffered from epilepsy but also lived with autism, which in our eyes made him even more special, not only to us, but to all who knew him. His smile had the ability to brighten even the worst days and his loss is deeply felt by every one of the many people whose lives he touched.His unique character never ceased to amaze and astound us all. Eds’ autism meant he found joy in the things that others would see as ordinary. Two of his favourite things were Coca Cola and photographs, which you could sense within five minutes of meeting him, as he usually had one or both in tow. His appreciation of the simple things in life was his biggest lesson to us all and despite the problems he faced on a daily basis, he always kept that cheeky grin, for which he will always be remembered.
Eds’ epilepsy became increasingly more severe as he got older and reached adulthood, which was terrible for him to endure and for us to witness on a regular basis.
In creating this memorial fund we hope to not only preserve the wonderful memory of our truly unique son and little pesky brother, but to also help others that suffer from this debilitating illness daily, as our brave young man did.
You will live on forever in our thoughts and hearts. Sleep tight.
– Lesley, Paul & Emily Bird, February 2014
To make a donation to Edward’s memorial fund, please use the link below.
Steven was only days away from his 42nd birthday when he suddenly passed away from SUDEP. Steven’s epilepsy had become more difficult to control in recent years although he managed his condition well before.Steven never let his condition stop him from taking on life. He worked, travelled, and had so many good friends. Epilepsy Research UK was dear to Steven’s heart, he ran in the London BUPA 10k and raised hundreds of pounds for them.We would like to continue to raise money in his memory and also raise awareness of SUDEP. If another family can avoid the same tragedy as us and many others, then every penny counts.
– Laura and Paul Napper, February 2014
To make a donation to Steven’s memorial fund, please use the link below.
Marie was my beautiful wife, a young lady of 37 enjoying life to the full. Then all of a sudden she was gone. The loss of Marie is so immense, and there is a huge hole in our family and a space that will never be filled within me. Marie was a devoted mother to her two young sons Daniel and James, big sister to Kay and Lisa, eldest daughter of Christine and Ray and a wonderful friend to many.
Marie developed epilepsy when she was 31 years of age and we do not know the reason for this. She coped well with her seizures but they were never fully controlled and we had never heard of SUDEP. Only close friends and family were aware of her condition as she tried to maintain a normal lifestyle.
In January 2013 Marie had returned to work as a music teacher at a secondary school. She loved music and had recently gained a further diploma in piano performance. She enjoyed work and was passionate about education in the wider sense.
On 23rd April 2013 Marie came home from work and complained to me that she was very tired. After giving a piano lesson to a young student at home she asked me to look after the children’s night time routine whilst she had an early night. I had earlier in the day made a booking for our summer holiday in France and Marie was really happy when I told her we were going back to Fontainebleau where we had previously stayed. Later that night Marie had a seizure and died. We explained to her two young boys that Mummy went to sleep and never woke up.
We hope that this memorial fund in Marie’s name will inspire everyone to raise funds for research into a much needed cure.”
– Christopher Cherry, Daniel and James Cherry, Kay Salisbury and Lisa Cosgrove, Christine and Ray Davies, December 2013
To make a donation to Marie’s memorial fund, please use the link below.
Mark was a much loved son, brother, uncle and nephew, who sadly passed away on Easter Sunday, March 2013, aged 45. Mark had his first seizure when he was 22, and then had a further severe seizure when he was 25. After this time Mark’s seizures became regular and difficult to control, he was often hospitalised due to the severity of the seizure. Mark was also diagnosed with MS at the age of 19.In March 2012 Mark had a very severe seizure which had serious effects on his MS resulting in Mark spending several weeks in hospital. Mark was then transferred to a nursing home as he was unable to live independently where he lived for 11 months before Mark sadly passed away.
Even though the MS and epilepsy gave Mark significant challenges in his life, Mark still lived life to the full. Mark enjoyed going on several holidays a year with his mum and family, Mark also enjoyed going out regularly. Mark was always full of smiles and jokes and would brighten up your day. Even though his memory was severely affected by the epilepsy, Mark would never let this get in his way and would always have his little phrases ready to make you laugh. Mark had a great love for his football team and also loved the colour red.
Mark was so happy and even though he needed 24 hour care he would never complain and would always joke with his carers. Mark had a very strong Christian faith and was never scared about what lay ahead.
Mark has left a big void in our lives, his family, especially his young niece, always looked to Mark to share his happiness and he is missed by everyone. Mark will always be remembered with a smile.
Epilepsy can be a cruel condition where it continually takes part of your loved ones memory, and donations have been made in memory of Mark to help others.”
– Nicky Addison, May 2013
To make a donation to Mark’s memorial fund, please use the link below.
Amanda was our beautiful daughter, our only girl, a young woman just 21 enjoying life. Then all of a sudden she was gone, the loss of Amanda is so immense, there is a big hole in our family. Amanda was a great big sister to Mark and Sam and a wonderful friend to many.
As a child Amanda had encephalitis and after she recovered she was left with epilepsy. Amanda coped well with her seizures but they were never fully controlled and we had never heard of SUDEP.
In 2005 Amanda went to China for a month, she loved the people and the culture and it inspired her paintings. She loved art and in October 2006 Amanda went to university; Amanda was a very talented artist and created wonderful works of art.
On 25th April 2007 Amanda spent the evening on campus with other students, she was very happy. I rang her that night as always, I worried about Amanda and chatted to her that night, she said “Don’t worry Mum I’m fine”. She sounded so happy and we planned a day out, but later that night when alone Amanda had a seizure and died.
We hope that this memorial fund in Amanda’s name will inspire everyone to raise funds for research into a much needed cure.”
– Simon, Caroline, Mark & Sam Redfern, March 2013
To make a donation to Amanda’s memorial fund, please use the link below.
Thanks for visiting.Richard was a mild epilepsy sufferer, a condition which he controlled successfully for many years. It’s very sad to lose such a wonderful man so early in life and it was his wish that epilepsy could be better understood, better treated and ideally by natural treatments.Your donation will be extremely valuable for the Richard Nieper Memorial Fund at Epilepsy Research UK and will help identify the causes, find new means to control epilepsy, to improve the treatment and ultimately perhaps to find a cure.
Thank you so much.
– Christopher Nieper, January 2013
To make a donation to Richard’s memorial fund, please use the link below or visit the Just Giving page here.
Zoё tragically died in her sleep on 20th October 2012 aged 36. She had lived with epilepsy since she was 12 years old. Zoё was a vibrant person who laughed readily and whose smile lit up a room. We are comforted by the fact she was at a very contented and happy stage in her life, only the previous day she had placed an offer on a house with her partner Paul.Zoё’s epilepsy was reasonably well controlled with medication and in 2004 she had a Vagus Nerve Stimulator implanted which controlled her partial seizures but didn’t stop her from having occasional more major seizures. In her later years all of her seizures had been during the night.
The main triggers for Zoё’s seizures were lack of sleep and stress, but Zoё never let her epilepsy define her or stop her from living life to the full. She had travelled extensively including trips to Nepal, India, the Far East and Uganda. Her next adventure was to be a trip to Brazil travelling up the Amazon. She went through life with a positive attitude, always excited by new possibilities and adventures, enjoying wild camping, mountain biking, hula hooping, Zumba classes, African drumming, outdoor swimming, live music and dancing.
She worked on a project called “Skills for Life” in Wolverhampton, teaching life skills to adults with learning difficulties. She started there as a volunteer in 1998 and in 2010 she became the manager. Her enthusiasm, hard work, tenacity and determination saw the project grow and develop into something that many students, parents and staff are very proud to be a part of. She also somehow managed to find the time to be a Samaritan.
As well as Paul, Zoё leaves behind her proud parents Chris and Geoff, sister, Anna, her niece Ella and many, many good friends. We would like to support Epilepsy Research UK in Zoё’s name and hope that its work will help to gain insight into this condition and prevent it from cutting others’ loved ones lives so short.”
– Anna Mayne, November 2012
To make a donation to Zoё’s memorial fund, please use the link below.
“Gary David Rance was born in Eastcote, Middlesex in August 1963 and died unexpectedly in his sleep whilst having an epileptic seizure at the age of 41 in December 2004. Gary was always a local lad at heart but did venture out and live in the USA in the late 1980’s, but returned to his home town after 18 months.Gary was a fun-loving, live-life-to-the-full sort of person. He was a strapping lad who loved to play rugby in his spare time. Unfortunately, in 1992 Gary had his first seizure and was rushed into hospital. He was later transferred to Charing Cross Hospital as doctors suspected that he had a brain tumour. After operating they found that it was an abscess, and not a tumour to everyone’s relief, which they managed to drain completely.
After two clear years, Gary developed epilepsy, the cause of which was the scar tissue on his brain left over from the operation. Gary continued to live life to the full and thankfully his seizures were mainly nocturnal, which he managed to control with medication.
His passions were his family, rugby, motor-racing, Elvis, and he would be at his “happiest” if he could share a day at the races on special occasions with those that he loved. He was an experienced and skilled motor mechanic and had worked hard to build up his own mobile auto air conditioning/refrigeration business. When he died, he was about to take ownership of a service garage locally in Pinner, which would have fulfilled one of his lifetime dreams.
Gary was a proud and very wonderful dad to his three daughters: Rachael, Adele and Hannah. He was also a loving Son, Brother, Partner, Uncle and Friend, and is still missed more than words can say by those who loved him, though he lives on in our hearts and thoughts daily.
We wanted to set up this memorial fund to raise money for research as we feel that epilepsy is not always fully understood, and would like to help others avoid the heartbreak that we’ve suffered in losing Gary.
This year, Gary’s nephew Leon will take part in the London Triathlon. The monies raised will go towards the Gary David Rance memorial fund to support Epilepsy Research.
– Linda Paul, May 2012
To make a donation to Gary’s memorial fund, please use the link below or visit the Just Giving page here.
On December 12th 2010, our fit and healthy son Lee, aged 24, went to bed and never woke up. The previous day he had secured a job coaching soccer to children in America. SUDEP (Sudden Unexpected Death from Epilepsy) had claimed another life.Despite being diagnosed with epilepsy at the age of 9, Lee achieved so much through his natural sporting ability, his enthusiasm and zest for life, with a smile for everyone he met. Neither Lee, nor us, were aware that epilepsy could kill. Tragically, now we are.We owe it to Lee, and thousands of other people with Epilepsy, to increase awareness of this terrible condition and to raise funds to help research into finding a cure.
Our campaign started in May 2011, when Lee’s dad, Simon, was joined by family, friends and Lee’s colleagues from Kitbag in the Manchester 10k, and over £20,000 was raised in his memory. We’ve no doubt that Lee would have approved of our participation in such a high profile sporting occasion, and will have been smiling as some of us struggled over the finishing line!
Lee’s love of sport will never be forgotten by all who knew him, and both the football and cricket clubs he played for have created memorial trophies in his name as a tribute to the contribution he made both on and off the pitch.
2011 was a year packed with events in tribute to Lee, including luncheons, coffee mornings, sponsored swims and walks, a beer festival, a golf day, a football dinner, a fashion show and bag packing in M & S! In Feb 2012, the “Smile with the Stars” Ball was held at Lee’s beloved Elland Road, an event that was attended by 650 guests and raised over £53,000 in his memory.
Lee’s life was tragically cut short, but his achievements are greater than many of us manage in a “full” lifetime – it’s these qualities that drive us to achieve great things in his memory.
– Simon, Vicky and Becky Johnson, May 2012
To make a donation to Lee’s memorial fund, please use the link below or visit the Just Giving page here.
The loss of our only beloved Sarah was so sudden and unexpected, so we have decided to start this memorial fund in Sarah’s name, which helps us keep her fresh in our memory and make people more aware of epilepsy.Sarah went to bed that night happy and excited knowing that she was going out the following day on a trip with her school, and was also going to buy a new dress for her graduation and school disco. She was also looking forward to moving on to college in Liverpool, but unfortunately that never happened. On the 13 July 2010, Sarah passed way in her sleep from an epileptic seizure.
All of Sarah’s family and friends were devastated at the loss. Sarah touched a lot of people’s hearts and always lived her life to the full, a larger than life character to everyone that knew her. Sarah loved drama, music, swimming, fun fair rides (the bigger the better), Everton Football Club, cycling, playing on her Play Station games, shopping, but didn’t like walking.
Sarah was appointed the ambassador of her school due to her love of her school and her ability to help others, and still retains the position at the request of her school. Sarah loved the colour pink so we and all of her friends let pink balloons off at her graduation, the day we received Sarah’s diploma on behalf of Sarah, a very proud moment for us.
We think about Sarah all the time and every day miss her smile and laughter. We feel good that we have set up the fund and know that Sarah would be pleased that we are helping others by doing so.
– Margaret and Kevin Hobson, September 2011
To make a donation to Sarah’s memorial fund, please use the link below.
Sunday 29th May 2011 was the day that broke my heart, the day my husband died suddenly and unexpectedly in his sleep. The cause of death – SUDEP.Adrian was 34 years young (although if you asked him that question he always said he was 21). He had the right medication and dosage that controlled his seizures well, and Adrian led his life as he wanted. He refused to see epilepsy as a disability or as something that should hold him back.
Adrian was a wonderful son, grandson, brother, uncle, nephew and of course my perfect husband. He was unassuming, quiet and the most thoughtful person I’ve known. Everyone who knew him even for a short time will agree he was definitely one of the good guys. One of those rare people that everyone loved admired and respected, his soul was pure and good. When they say nobody is perfect I can argue – some people just are.
Adrian was fanatic about Manchester United; an avid reader and computer wizard! He enjoyed learning about history and had a keen interest in politics and current affairs. We enjoyed exploring the coast, visiting museums, walking around parks and especially loved spending days at the zoo.
Adrian changed my life and made me the person I am today. He believed in me and his memory will always live on through me. The life I thought I was going to have has been torn apart but I have a life and I will use it as Adrian would want – not to waste it and to make the most of every day. For him, I will do what I can to fulfil the dreams we shared.
I’m the luckiest girl in the world; for having known him but especially at becoming his wife. Adrian is the love of my life, not just my husband – my best friend and my soul mate. Adrian is still teaching me things – life is short, for some bitterly so; memories are comforting so make as many as you can and life is what you make it.
We all have great memories of Adrian; he would want us all to cherish memories, share our stories, laugh and cry and love. We are heartbroken that he has been taken from us, but we’ll celebrate the wonderful life that he led.
– Mrs Jenn Webley, September 2011
To make a donation to Adrian’s memorial fund, please use the link below or visit the Just Giving page here.
We tragically lost our beautiful baby boy when he was just 12 weeks old after a heroic fight with Ohtahara Syndrome. Oliver was the bravest little boy and such a fighter. Here is his story:After a normal delivery we were so excited to finally meet our baby boy. Oliver is our first child and was so desperately wanted. Within a few days of the birth the nurses picked up on some unusual twitches and he wasn’t feeding. As a precaution he was moved to the Special Care Baby Unit, where he had lots of tests to rule out common illnesses, which all came back normal. It was here that the doctors said these movements were seizures and he was given anti-seizure meds to control them. He reacted badly and as a result starting having convulsions and breathing problems, which meant he had to be put in ICU and on life support. This was the start of a nightmare that no child should have to face. As the seizures were unexplained, Oliver had to be transferred to the Intensive Care Unit at Alder Hey Children’s Hospital in the hope that the neuro-specialist could help him. For 3 weeks we travelled the 120 mile round trip to sit and hold our baby’s hand and watch him being so brave whilst they took daily blood/did numerous other invasive procedures – still hoping and praying that he would be ok.
After an unusual EEG it was discovered he had an extremely rare form of Epilepsy called Ohtahara Syndrome, which meant a short life expectancy. After the initial shock we took strength from our amazing little boy and decided we would make his time the best ever. His condition meant that the seizures were hard to control, but Oliver responded well to the new meds and they even managed to get him off the breathing support and when he was 4 weeks old we finally got him home with a feeding tube. A week later he was admitted back to hospital as he stopped breathing after being sick. He was put on breathing support, but then after numerous attempts to reduce the support, Oliver wasn’t able to manage on his own. We had to make the painful decision to say goodbye to our child and withdraw the support. We were put in our own room and had to sit and watch his struggle to breathe. After a rocky few hours Oliver did the unthinkable and pulled through, and 24 hours later the doctors allowed us to take Oliver home to spend his remaining life surrounded by family. The doctors didn’t know how long we would have, whether it would be hours or days, but in the end we managed to have another six weeks with our beautiful boy. In those six weeks his seizures got harder to control and he was having episodes where he stopped breathing due to the seizures. Being the trouper he was he barely cried and was so brave. In the end it was just too much for his little body to take and he finally passed away peacefully in his sleep when he was just 12 weeks old.
They haven’t found any medical reason why Oliver developed this condition, so we would ask you to please support us and help us to raise money for Epilepsy Research UK, so that they can research into these nasty and rare forms of epilepsy and hopefully find a cure so that innocent babies like Oliver and their parents don’t need to go through what we have.
– Duncan and Susie Jane, August 2011
“Always remembered, constantly in our thoughts. Much love Granny and Grampy” – 24/12/2013
To make a donation to Oliver’s memorial fund, please use the link below or visit the Just Giving page here.
William was a 3rd year MChem student at the University of York and had come home for the Easter holidays when he died suddenly and without warning in his sleep on 7th April 2011 aged 21. His family and friends are utterly devastated. We have lost a loving son, brother and our best friend and the world has lost a gifted scientist. Although he didn’t sit his final exams, the University of York has awarded William a posthumous BSc in chemistry in recognition of his hard work and his potential.William was an intelligent, generous, kind-hearted young man and we will always be immensely proud of him. His slightly eccentric traits endeared him to everyone who met him and it is a cruel irony that the chemical and electrical make-up of his brain which gave Will his unique personality would lead to this untimely tragedy.
In his last few days, Will had spent his time revising for his final exams, fixing a neighbour’s computer, playing computer games and learning to play the ukulele he had just bought to add to his collection of musical instruments. At midnight I asked him not to stay up too late playing computer games. That was the last thing I said to him. He usually slept in late and when his father took up a coffee for him at lunchtime, it was obvious that he had had a seizure and passed away much earlier in the night. It was a horror no parent should ever see.
Will had his first seizure at 18, one night just before he went off to University. We saw the doctor immediately and following a normal MRI scan it was thought to be a one-off incident caused by over-excitement about the prospect of going to University. After 16 months he had another seizure at night and we discussed medication with the consultant who advised us that the seizures were so infrequent that in his opinion medication was not necessary at that time. Will refused to accept that he had epilepsy at all, or that it was a serious and potentially life-threatening condition. Neither did we really understand, although the very rare possibility of SUDEP (Sudden Unexpected Death from Epilepsy) was mentioned at one meeting. Will had another seizure about 10 months before be died but the consultant still ‘signed him off’. Will took this to mean that he was ‘cured’ but agreed that if he had one more seizure he would start medication even though we all knew there was no guarantee this would prevent seizures in the future. The next seizure resulted in his death.
William was a brilliant scientist so we felt that Epilepsy Research UK was the right charity to set up a Memorial Fund in his name. The work of Epilepsy Research UK is focused on researching into the causes and treatment of epilepsy, with the aim of achieving better understanding of the causes, identifying new means to control the condition, improving the treatment and quality of life of those with epilepsy, and perhaps ultimately to find a cure. It is the only national charity dedicated to funding independent epilepsy research.
Thank you for your support.
– Imelda and Michael Kay, and Will’s brother Christopher, May 2011
To make a donation to William’s memorial fund, please use the link below or visit the Just Giving page here.
Richard Fieldman BEng (Hons) CEng MCIBSE, (Rich to his family, Bic to his friends), developed sleep epilepsy at the age of 31, and suffered violent seizures in his sleep every 3 months or so. He tolerated a long period without a driving licence, and the side effects of the drugs that were not helping improve his condition – the terrible lethargy and forgetfulness. To a man like Rich, this was just not a way of life for him and whilst he lived with his condition, he feared it would not allow him to be the person he was, dedicated, free and full of life.Epilepsy ultimately and tragically took his life on the evening of 26th February 2011, aged just 35. Rich went to bed after a happy weekend celebrating a friend’s birthday, with his beloved dogs by his side, and never woke up.
It is very easy to say in passing, that Rich was one of life’s unique, truly special people. But in this case, every word is true. He was forging a fantastic career in engineering and was incredibly well respected amongst his colleagues and peers. He managed major construction projects for his employer, and had won numerous awards throughout his career. He was a wonderful sportsman, a mountaineer, a rock climber, an ice climber, a highly skilled skier, a long distance runner, a cyclist; his love of the outdoors started as a small boy and knew no bounds. His latest challenges for 2011 were the Mont Blanc ski tour in April, the most famous ski tour in the world, and climbing the Matterhorn in July. He truly adored his friends and family and would do anything for us all, anytime. He encouraged us all to be the best we could possibly be, and we all were our best, when we were with him. He loved red wine, and made the best pizza in the world. His two border collies were the apple of his eye. In short, he filled all of our hearts with joy and souls with sunshine.
I have set up the memorial fund, simply as we do not wish another mum, wife, brother, friend or colleague to lose someone so amazing, so suddenly as we have, to a condition in which there should be more understanding, better quality treatments, and a better quality of life. Nobody should have to fear going to sleep at night, as Rich did, and fear not being able to live a normal life. We hope to raise as much money as possible for this worthy charity in memory of a wonderful, beautiful man who will be missed by so many, but whose memory, and legacy will live on.
– Emma Fieldman, March 2011
To make a donation to Richard’s memorial fund, please use the link belowor visit the Just Giving page here.
Liane Alton explains why she has chosen to set up a memorial fund in memory of her brother Michael, who died age 7.Michael had had one fit and the doctors weren’t sure if it was epilepsy or just because he had banged his head. He then had a second fit and unfortunately he died from this one. It was a massive unexpected shock, and it has taken a long time for me to be old enough – I was 9 when he died – and brave enough to set up this fund in his memory. I hope to raise as much money as possible in his memory as I hope no-one in the future ever has to lose a child/sibling so unexpectedly.I will doing lots of different fundraising events to try and raise money for this fantastic charity. You can find out more about what I’m up to at my justgiving team page for Michael’s memorial fund.
– Liane Alton, March 2011
To make a donation to Michael’s memorial fund, please use the link below.
Our precious son Andrew was 10 years old when he tragically passed away Nov 2010 in his sleep due to SUDEP. Andrew was our only son and he leaves an older sister. We will never stop loving him and we will never forget him. People say the pain gets easier to cope with but for us it’s as bad now as when we lost Andrew. We struggle every day without Andrew and we miss his massive smile and kind nature. Andrew was diagnosed with epilepsy when he was 4 years old, during the following 6 years the medication struggled to cope with Andrew’s type of seizures.Andrew lived life to the full, he was active in the form of swimming, cycling and walks in the forest were his favourite outdoor pastime. He was also very keen on camping in Aviemore’s Rothiemurchus forest where he cycled extensively. Andrew was also a massive Dr Who fan collecting all types of figures and DVD’s, and visiting exhibitions whenever he got the chance.
His dad took part in the London Triathlon in aid of Epilepsy Research UK in 2010 and Andrew was so chuffed that his dad was raising money to try and ‘make him better’. To this end dad will take part in the 2011 London Triathlon again to raise money for Epilepsy Research UK along with his brother and a very close family friend, and hopefully the sponsorship raised will help other families avoid the pain that we are feeling just now.
Family and friends have different events planned to raise funds in aid of Epilepsy Research UK to include Lochgoilhead New Year’s dip, Buckie 8 hour sponsored swim, London Triathlon, various 10k charity runs and possibly the Epilepsy Research UK Himalayan Trek.
Andrew had decided to take up the challenge of triathlons, and no doubt he would have raised money for epilepsy research. We had planned to take part in the Grantown-on-Spey ‘Try a Tri’ and Andrew had started training for this event.
We think about Andrew every minute of every day and miss his massive smile and infectious laugh. We are confident that Andrew would have been pleased that we are continuing to raise money to help others.
– Jill, Kevin & Nicola Graham, March 2011
To make a donation to Andrew’s memorial fund, please use the link below or visit the Just Giving page here.
Our much-loved son Luke died in his sleep in January 2011, aged 27 years, after suffering an epileptic seizure. Luke, from Sheffield, was diagnosed with epilepsy when he was 11 and up to the last couple of years it was controlled with medication.Luke lived life to the full and would never let his epilepsy get in the way of anything he wanted to do. Luke wasn’t sporting but for the last few years he ran the Manchester 10k and once completed the Great North Run with excellent times. In May 2011, Luke’s friends and younger brothers Matthew and Steven will run the Manchester 10k in Luke’s memory.
Luke went to Derby University to study Theatre Studies and Creative Writing. Theatre had been his passion since an early age as well as devising scripts when he was still too young to write and dictated them instead. After graduating in 2004 Luke moved to London to study Stage Management.
After doing a few short-term jobs, Luke got his first job in stage management as Assistant Stage Manager for the pantomime at Malvern Theatre; his time was cut short when he had a seizure resulting in a dislocated shoulder. Luke spent some time “resting” before obtaining the job of his dreams as an actor with Rhema Theatre Company in Manchester. Rhema is a Christian theatre company which complemented Luke’s deep faith. For the first year he travelled the country in a van with two actresses performing Bible stories in schools, churches, and even a prison. Since then he was employed as Associate Director, directing the acting companies, writing scripts, liaising with schools, speaking and acting at conferences and many more responsibilities.
Luke’s Rhema family talk about him being a “Legend” who was a child magnet, a great encourager, a wonderful friend, and had incredibly bendy legs, a wicked sense of humour, liked falling into dustbins and fighting with crocodiles! Luke’s family take comfort in two things Luke said over his last Christmas and New Year. The first was that he had “the best job in the world” and the second was that he’d had “the best Christmas ever”. Luke touched so many people during his short life; he relished the fact that in the pre-Christmas 2010 shows he reached 23,000 children having recorded “the voice of God” for all three companies.
Luke has left a hole in the lives of so many people that will never be filled. We have set up this memorial fund so that hopefully other families won’t have to suffer the pain we are going through. Epilepsy is such a complex condition that is so little understood and has little media attention, so we hope you will donate to this worthwhile cause.
– Heather and Paul Rotherham, February 2011
To make a donation to Luke’s memorial fund, please use the link below.
We tragically lost Lucy to epilepsy in Feburary 2011, she was 28. She was a larger than life character whose lust for life charmed all who her met her and made her many many friends. Over the years Lucy had her ups and downs living with the effects of her illness but she was always positive and never let it get in the way of realising her ambitions and living life to the full. She was the life and soul of the party and her untimely death has left her friends and family devastated at such a loss.At school she excelled in sport, music and drama and was recognised particularly in swimming and as the hockey team’s beloved goalie. She remained a sport lover and went on to captain the hockey team at Sunderland University. She passionately supported Spurs and loved nothing more than a Saturday knees up at the Rugby.
Lucy went on to achieve not only a degree in Film and Media Journalism, but also a post-grad diploma in Newspaper Journalism as well as gaining an HNC in Construction Management during her professional life. She was particularly active and you would never have been aware of her difficulties with epilepsy if you were to meet her. Especially as she completed the London-Paris Triathlon in 2007, as well as the Tough Guy Challenge in 2008.
The family would appreciate donations made via the Lucy Jane Brooks Memorial Fund to Epilepsy Research UK, a charity that researches the causes and treatment of epilepsy with the view to eventually find a cure. In supporting their work, we can hope to help others with this condition so that they can live full and happy lives.
– Elizabeth Ross, February 2011
To make a donation to Lucy’s memorial fund, please use the link below or visit the Just Giving page here.
“Our son Daniel sadly passed away suddenly in December just 5 months old. Daniel started having seizures when he was just 3 days old. He was so young and we would find him half way through his seizures and wonder why he was staring up in the air and breathing slightly different. We’d never seen one from the start till he was 2 weeks old when his colour changed to blue and his eyes went squint and we knew there was something seriously wrong. Daniel was taken to hospital in Dumfries for observation for 3 days, discharged for 2 days and then was back in hospital for 5 weeks between Dumfries and Yorkhill in Glasgow.Daniel was diagnosed with epilepsy after a seizure which lasted 25 mins while he was on an EEG. He was put on medication to control his epilepsy and it seemed to be helping as he only had one more seizure during the 20 weeks he was on it whereas at the beginning he was having one every 4 or 5 days. As time went on and with help from a physio he was doing brilliantly, starting to relax more and reaching out for things.
Daniel was such an alert wee boy, always taking everything in and laughing and smiling at everyone. He was beautiful with his big blue eyes, dark hair and pure skin. He had everything to go through with lumbar punctures and blood tests but he was always so brave and happy. He totally loved his big sister Molly who is 4 and she was always trying to mother him and make him smile. Daniel also loved getting baths with Molly and getting sung Twinkle Twinkle too. His dad Alex was already getting him into the football and he loved sitting on his knee watching it on the tele.
We are going to do everything we can to make a good name for Daniel by raising as much money as we can for Epilepsy Research UK to help others. Daniel is our brave wee soldier who was taken too soon and too young. He has touched a lot of people’s lives with his bravery and big flirty smiles and will never be forgotten.
– Rebecca Foster and Alexander McColm, December 2010
“Love you our wee angel, Love your big sisters Molly and Aleesha.”
“Love you and miss you so much Daniel our wee star, Mummy and Daddy.”
To make a donation to Daniel’s memorial fund, please use the link below or visit the Just Giving page here.
Rachel died in her sleep as a result of SUDEP (Sudden Unexplained Death in Epilepsy) on the 26th November 2010 at the age of 31 years. Rachel was very happily married to Phil, and had two wonderful young sons, Joseph and Liam. Joseph, Rachel’s eldest son, was born very prematurely at 23 weeks and spent a number of months in a critical condition in intensive care at Addenbrooke’s Hospital, Cambridge. During this time Rachel was always by his side, fighting every battle with him.Rachel had suffered from epilepsy from the age of 11 years when she had her first nocturnal seizure. At the age of 17 years Rachel also started to have day time seizures. She had no warnings of the seizures and often damaged herself in falls. On the afternoon of the 1st of January 2008 whilst at a family dinner party, Rachel suffered multiple seizures and was hospitalised. Rachel’s memory was badly affected by this experience, particularly her short term memory, and her health never fully recovered. Liam her youngest son was only 10 months old at the time. Rachel was placed on new medication following the multiple seizures and she managed to go until August 2008 without any seizures, but then they started again. At the time of her death Rachel was taking large doses of medication which impacted on her quality of life. She suffered from exhaustion and her immune system seemed to be incredibly weak. The seizures continued.
Despite her poor health Rachel refused to let her epilepsy inhibit her love of life. She never, ever felt sorry for herself and remained the most independent of individuals. She was great fun to be with and had a quirky personality and wicked sense of humour. Rachel was also an extremely caring and compassionate individual and a passionate supporter of the ‘underdog’ and Middlesbrough Football Club!! Rachel supported other epilepsy sufferers through internet chat lines and was a volunteer at a night shelter for the homeless. She had a guaranteed place on the Great North Run for 2011 where she was running for epilepsy charities.
When she died she was at her happiest: she loved her boys, her husband, her family and her new house. She was particularly happy with the early Christmas present of a dishwasher from her parents Dawn and David. Life was good. She had so much to look forward to.
Her family wish her memory to live on through this memorial fund.
– Dawn, David and Tim Rahman; Phil, Joseph and Liam Wardleworth, December 2010
To make a donation to Rachel’s memorial fund, please use the link below.
“Saturday 12th April 2003 was the happiest day of our lives, our first and only son Jackson J Marshall was born. Jackson was the most wonderful little boy we could ever have hoped for, he was so loving, caring, sharing, happy and enthusiastic. He loved to play outside, ride his bike and tractor and play with his sister Autumn. Jackson died suddenly on Tuesday 24th November 2009, aged just 6 1/2.We have set up The Jackson J Marshall Memorial Fund in his honor. This year 2010, we are raising money solely for Epilepsy Research UK. Whilst Jackson was never diagnosed with Epilepsy we have been told this was the reason for his sudden death (SUDEP). There are so many questions we have, that we feel by supporting this charity through our fundraising and awareness, it can help them to research further this utterly complex condition. Jackson was also such a giving boy it is only right to continue his name in a positive manner. We miss him more than words can say, he will be forever in our thoughts and hearts.
– Sara, Gary and Autumn Marshall, December 2010
To make a donation to Jackson’s memorial fund, please use the link below.
“Our lovely daughter Sophie died tragically aged only 23 years old in an epilepsy related accident in July 2010 following 3 days in intensive care at the Royal Free Hospital in London. Sophie was diagnosed with epilepsy when she was 10 years old and it was reasonably managed with maybe 1 or 2 seizures in a year.Sophie was a bright, vivacious, kind and fun loving girl with great compassion for her fellow human beings. She would never just “walk by” and could always spare a few pounds even though she earned little money and supported several charities on a regular basis. Sophie was also an organ donor and it makes us immensely proud and gives us some comfort in our grief knowing that her ultimate gift of life has helped save the lives of 4 people.
Sophie lived with her family in Saffron Walden until going to study Fine Art at the University of Creative Arts in Canterbury, where she graduated in 2008. She then moved to London where she had recently started working for Golden Square Post Production Company and also had a part time job at the Coachmakers Pub in Marylebone Lane. She loved her work at both places where she found a treasured group of friends who played an important role in her life. Sophie was very creative and talented and wanted to pursue a career in animation and she was immensely grateful for the help and support offered by her colleagues at Golden Square.
The loss of Sophie has left an enormous hole in our families that can never be filled and life will never be the same again without her here, but we take comfort from the fact that she touched more people and crammed more fun into her 23 years than some people achieve in a lifetime. She was an adored big sister to her brothers and sisters, Tom, Emma, Naomi and Henry.
We have set up this memorial fund to try and help find a cure for this terrible and unpredictable affliction that can take our loved ones from us with little or no warning no matter how carefully they live their lives. There is still a lot to learn about epilepsy and we hope that you will donate to this very worthwhile cause that can potentially affect all of us directly or indirectly.
– Annette Heden and Martin Hannon, October 2010
To make a donation to Sophie’s memorial fund, please use the link below or visit the Just Giving page here. You can also link to Sophie’s memorial fund via Facebook.
Charmaine died in her sleep on her 25th birthday on New Year’s Eve, 31/12/2009. Her cause of death was Sudden Unexpected Death in Epilepsy. Charmaine was actually having tests under the hospital and had not yet found the results of what she was suffering from, though she was taking medication for epilepsy.Charmaine started having fainting spells during her time at Preston University, while studying Criminal Law. She didn’t start having seizures until three years later when she had returned home to Birmingham to her parents’ house. She was placed on medication for epilepsy, as her mother has epilepsy.
Charmaine moved out of the family home and settled into a flat where she began a relationship with her boyfriend, Chris, at the age of 22. She had just one bad seizure during this period, and it was only during her last few months that she started to have fainting spells again. Charmaine started having tests just before Christmas, and it was a total shock to family and friends when she passed away. Chaz, as she was also known, leaves behind her mom Lisa, dad Carl, brothers Martin and Ross and her only nephew Rhys. She and her partner Chris were planning to get married and start a family of their own.
Charmaine worked for Virgin and lived her life to the full. She was a popular person and made a big impact on people. She will be greatly missed.
Charmaine’s parents decided to collect donations from her friends for her funeral and have opened this memorial fund in her name to support Epilepsy Research UK. We hope you will help and support this worthy cause, not only to keep our daughter’s memory alive, but to help others who struggle with epilepsy.
– Lisa and Carl Heritage, February 2010
To make a donation to Charmaine’s memorial fund, please use the link below.
Jason Biriny died on the 16th July 2008 from an epileptic seizure, he was 29 years old. His partner Katy decided to set up a memorial fund for Jason as a way of raising money to help others affected by epilepsy through more research, and also to raise awareness as to how serious this condition can be.Jason was the life and soul of the party, he never let epilepsy get in his way of enjoying life to the fullest. He was taken far too soon and left a huge hole in the heart of his family and friends. Quite simply he was a ray of light to all who knew him and is missed every day.
– Katy Love, September 2008
To make a donation to Jason’s memorial fund, please use the link below.
David Jordan was born in Portsmouth in June 1981. When he was 14 he had a cold that developed into sinusitis which culminated in an abscess on the brain which left him with epilepsy.Most of the time his epilepsy was under control but occasionally he had a seizure. On February 15th 2009 he had a seizure while waiting on the London Underground for a train, as a result he was in intensive care for a week and died unexpectedly on 21st February 2009 at the age of 27.
David went to university in Portsmouth and recently had been working in London with Southwark PCT. He had a love of music, most years going to the Reading Festival and Glastonbury.
He had the inner strength, self belief and confidence to live the life he wanted, never being held back by his epilepsy. He was a special young man much loved by his family and friends, he was known for his laid back approach, his gentle spirit, tolerance, humour, generosity and a smile that was contagious.
We will never forget him, we are immensely proud of our eldest son and brother to Nick, this memorial fund will be another way of keeping his memory alive and it may help others.
– Adam & Sue Jordan, March 2009
To make a donation to David’s memorial fund, please use the link below.
In January 2007 our happy, healthy and much loved daughter, Sharon, suffered a minor fit. After extensive tests she was told that it was probably a “one off” and not likely to ever happen again. On the 12th March 2007 she didn’t turn up for work – she was a Finance Assistant in Bournemouth – she had died from an epileptic seizure (SUDEP) during the night. She was just 25 years old. The devastation and pain that this tragic event has caused all of her family and friends cannot be put into words.Sharon loved life, she was a friend to everybody and everybody wanted to be her friend. A popular girl and a hard worker, who always had a beaming smile, she was a good listener and always willing to help others.
Her death was totally unexpected, and was made so much worse by the fact that her condition had been undetected.
It is for this reason that we started a Memorial Fund in Sharon’s name. We hope that at some time in the future, this sudden and tragic event need not occur if the causes of epileptic fits can be found and an early diagnosis made. It will not bring Sharon back nor will it ease the pain but we would like to do all we can to help other people not have to go through the terrible shock of losing an apparently healthy loved one.
– Lorraine and Gary Norman
To make a donation to Sharon’s memorial fund, please use the link below.
Matthew Peckett, the only son of Jenny and Trevor Peckett, was a fit, healthy 6’4″ young man with everything to live for. He and his girlfriend Beky Forester had moved into a new house in Barkisland and looked forward to their future together. In 1996, aged 26, Matthew collapsed at work and was later diagnosed with epilepsy. Sadly, two years later in July 1998 Matthew died from Sudden Unexpected Death in Epilepsy.The Peckett and Forester families became great friends and supporters of the Fund for Epilepsy and Beky was a hard-working employee and supporter of the Fund offices in Barkisland, as were the rest of her family. Fundraising efforts for the Matthew Peckett Memorial Fund had been tireless, including 5- and 10-mile sponsored walks, bring-and-buy sales, coffee mornings, fashion shows, parties, and many other events.
Matthew was employed by the National Grid as an overhead power line engineer. He loved and lived for his work. Colleagues at the National Grid held a sponsored abseil down a 170ft office building in Manchester, and a Dress Down Day at work, resulting in a substantial amount being raised for the Fund.
As a tribute to their colleague, the National Grid named a new type of conductor after him: the Matthew, an innovative aluminium-zirconium alloy gap-type conductor. (It is normal practice to name conductors for ease of reference. Standard alloy conductors, for example, are named after trees.) The first Matthew conductor was installed in 2000 on a section of the Drax-Thorpe Marsh circuit (Yorkshire).
In 2008 the total raised by the Matthew Peckett Memorial Fund reached £20,000 and was committed to supporting the research of Dr. Steven Kemp of St. James’s University Hospital, Leeds. On the 10th anniversary of Matthew’s death it is good to know the monies raised in his memory, are being put to good use.”
– Jenny Peckett and Beky Forester, July 2008
A 2-year study ERUK study by Dr Kemp, investigating how to combine functional MRI and magnetoencephalography to work out who would benefit from epilepsy surgery, was been entirely funded by the Matthew Peckett Memorial Fund.
To make a donation to Matthew’s memorial fund, please use the link below.
Because the loss of Jade was so sudden and unexpected the memorial fund in her name has helped us keep her fresh in our memory and also focused on raising awareness in our community of epilepsy.I feel as proud of her now as I did when she was alive because people genuinely want to raise funds in her name and I can’t think of anyone better than Epilepsy Research UK because more research into epilepsy can only be a good thing especially if it can help prevent the loss of a loved one.
I have been approached by lots of people from our area who suffer or know some one who has epilepsy. By highlighting Jade’s memorial fund I believe people are not afraid to speak about epilepsy anymore.
We feel we are doing good by having the fund- it will never bring Jade back but at least we can feel satisfaction that we are helping others. In some ways I feel Jade is a kind of figurehead for epilepsy research.
– Damian and Rachel Cronshaw, January 2006
To make a donation to Jade’s memorial fund, please use the link below.
Following the untimely death of their daughter Samantha in December 2005 to SUDEP, Helen and Mike Pennicott wanted to find a way to raise awareness of epilepsy and decided to open a memorial fund in her name. Donations from friends and family at the funeral raised over £1,100 but that was not enough.Finding different ways to part people from their money, Helen, along with Sam’s boyfriend Darren, decided to do a skydive from 10,000 feet. Considering Helen has a fear of heights and Darren fears flying, this seemed the obvious option! On 11 June, at Dunkeswell Airfield, they launched themselves out of a perfectly serviceable aircraft with just a large silk hankerchief attached to their tandem friend. Luckily they landed in one piece and ensured Sam’s fund had a fantastic boost.
Each year, Le Creuset (Helen’s employer) chooses a charity to support. In memory of Sam, it was decided to sponsor Epilepsy Research UK. In August, a “Farmfest” was held in Postbridge, Devon, where 499 people attended a mini rock festival and had a fantastic time. With tickets, hog roast and the usual beverages, over £2,300 was raised for the charity.
On 24 September, 26 employees from Le Creuset, members of their families, customers and suppliers, cycled “Le Tour De Store” from the shop in Andover to the shop at Gunwharf Quays, Portsmouth. After 51 miles of cycling, drinking water and eating chocoate, their aching limbs managed to raise over £2,000 to boost the memorial fund.
With all of this and Sam’s friends running the London Marathon, we hope to raise £10,000 by the first anniversary of her death. Plans for madcap fundraising for next year are already on the drawing board.
In July 2006, Mike was presented with a posthumous BA Hons Degree for Sam – the work she had completed for her degree in Interior Design was enough to ensure she was awarded the accolade she so richly deserved.
To make a donation to Samantha’s memorial fund, please use the link below.
On 8 February 2006, Ellen Mezzetti died in her sleep from epilepsy, aged 16. Ellen leaves behind her parents John and Lynne and two brothers Jack and Henry. They have all spent the last year coming to terms with their tragic loss. This will obviously continue throughout their lives and to their credit they’re doing this with great dignity.Ellen is an integral part of the Mezzetti and Facey family and will never be forgotten. A memorial fund has been set up in memory of Ellen. They have already raised £600 by holding a charity rounders match in August 2006. Cromer High School (where Ellen attended) held a performance, which Ellen was due to star in. This was held in memory of Ellen and raised in excess of £1,000 for charity.
On 16 June 2007, Joey Mezzetti, Andy Kett, Rob Bacon, Mark Claxton and Mat Willimott are all cycling from Land’s End to John O’Groats. They will cover approximately 1,000 miles over 7 days, averaging 140 miles per day. Two drivers in a camper van will support this. The cyclists will fund the tour and all money raised will go into the Ellen Mezzetti Memorial Fund.
– Joey Mezzetti (Ellen’s uncle), January 2007
To make a donation to Ellen’s memorial fund, please use the link below.
David was 23 when he died from epilepsy. He was a wonderful son, grandson, brother, uncle and cousin. A year before his death he was awarded a First in Physiology (Medicine) at Oxford University. He died two years before he would have qualified as a doctor.The family knew that a positive response to this awful tragedy was the right way forward. We grieved and grieved; we still grieve – but we have moved on. David was himself extremely positive and altruistic. He pleaded with us to help others in all kinds of distress and even on a student loan made a standing order to Save the Children. A few days after his death his positive words kept coming through the mist of tears. ‘Do something – and do it cheerfully!’
We quickly found out about Epilepsy Research UK and knew it deserved every support. David was himself interested in research. David’s memorial fund has been a wonderful focus for our energy and that of many of David’s friends. Marathon runs, coffee mornings, cream teas, a pantomime, a concert, a James Bond evening and “Bring and Share lunches” have been incredibly exciting, uplifting and cathartic events for us all. In truth, we have all gained inspiration by channelling our thought and energy towards helping research into this difficult condition. The greatest consolation is knowing that David would say ‘Well done’ and that very thought releases a lot of sadness. He would have added ‘Keep it going, there’s more to do!’
– Richard and Heather Scourse, January 2006
To make a donation to David’s memorial fund, please use the link below.