Tanya and Johdi

I just wanted Johdi to be able to live a normal life.

Johdi was a much-loved daughter, sister and friend who sadly lost her life to SUDEP, aged just 17. We spoke with Tanya, Johdi’s mother, who shared her story and spoke about the hope that, through research, fewer families will have to endure the pain of losing a loved one to epilepsy in the future.

Tanya’s daughter Johdi experienced her first febrile seizure at just 4 months old and had absence seizures throughout childhood. However, it was not until her first tonic-clonic seizure in June 2016, aged 16, that these were connected to epilepsy. Upsettingly for Tanya, this seizure took place on the first night she and her partner, Mark, had ever stayed away from home. Johdi’s younger sister, Aimie, phoned to ask them to return.

Johdi was diagnosed with juvenile myoclonic epilepsy in September 2016. On receiving the diagnosis, Tanya was devastated. Her brother had lived with epilepsy for many years until having successful surgery, so she was well aware of the disruption epilepsy could bring to Johdi’s life.

Tanya tried to stay positive with the thought that if her brother’s seizures could be stopped, then so could Johdi’s:
‘I just wanted Johdi to be able to live a normal life, but as ever Johdi took it all in her stride. She had bad days every now and then, but 90% of the time you’d never have known she lived with a condition. To the rest of the world she was just happy-go-lucky Johdi, always smiling. She was an incredibly strong person and had such an infectious zest for life.’

Despite Johdi’s determination, her condition started to take its toll. Tanya recalls:
‘It became harder for her to concentrate and she was only able to sit five out of her nine GCSE exams due to having seizures on exam days. The seizures really started to knock her confidence and she began not wanting to leave the house. At 17, it became clear to us she was struggling, she just wanted to be like her friends. As a parent you just want your child to be happy and it was heartbreaking.’

Johdi had bad days every now and then, but 90% of the time you’d never have known she lived with a condition. She was an incredibly strong person and had such an infectious zest for life.

Despite all these challenges, Johdi didn’t let her epilepsy stand in her way. She got a place at college to study her A-levels, and dreamed of getting a job working to help children with autism. ‘She was terrified and anxious on her first day,’ remembers Tanya, ‘but she made so many friends at college in the short time she was there and started to seem her old self again. She was doing something she loved and it was wonderful to see. Johdi had been living with three to five seizures a week, but in the six weeks prior to her death she had no seizures at all. As a family, we were starting to feel really positive about Johdi’s future a year on from diagnosis.’

Tragically, Johdi passed away in her sleep the day after her mum’s birthday:
‘We’d had a wonderful day all together. Johdi had been singing and making us all laugh, she seemed so happy and full of life. Just hours later the house was full of paramedics and police officers – it was impossible to process and deal with. The paramedics tried to resuscitate Johdi when they arrived, but I knew she was gone. My whole world fell apart right there.’

‘Mark and I were due to be on holiday at the time of Johdi’s death, but a week before I decided to postpone the trip after feeling uneasy about being away from home. No words can describe how painful losing Johdi was but I take some comfort that I was there with her that day and that it was me and not my daughter, Aimie, who found her.’

Despite multiple family members having epilepsy, we never knew about SUDEP or that Johdi was at risk. After her funeral, I knew I had to do something. To raise the awareness needed for SUDEP and epilepsy, so I organised the Purple Ball.

For Tanya, it is thinking of all the things Johdi was yet to experience in life that is the hardest part of losing her – her 18th and 21st birthdays, setting off for university, her wedding day, having a family of her own. Tanya said:
‘Despite multiple family members having epilepsy, we never knew about SUDEP or that Johdi was at risk. After her funeral, I knew I had to do something. To raise the awareness needed for SUDEP and epilepsy, so I organised the Purple Ball.’

Tanya’s Purple Ball has since become a hugely popular annual fundraising event in aid of Epilepsy Research UK and SUDEP Action. The most recent ball was due to take place on 27th February 2021 – one day before what would have been Johdi’s 21st Birthday – but has had to be rescheduled for October this year due to COVID-19. Alongside the Purple Ball, Tanya continues her dedicated fundraising along with her youngest daughter Aimie, who, despite a huge fear of heights, bravely took on a skydive last year.

‘There needs to be far greater understanding and investment into epilepsy and SUDEP research. It’s so important to gain and share as much information as you can with your doctors, researchers and charities. Ensure you get proper support and have your voice heard. If researchers and doctors are able to listen to and work with patients and their families, documenting and analysing all the day-to-day changes really could help to save lives. There is not enough money for research and doctors and researchers are really stretched, but Johdi’s death could have been prevented. All those small changes and learnings are significant.’

The family have also donated Johdi’s brain to research in order to support further investigations into the causes and prevention SUDEP. Following Johdi’s tragic passing, her epilepsy diagnosis was also changed:
‘We’ve worked closely with our local hospital since Johdi’s death, as well as campaigning for greater awareness for doctors, nurses and, of course, patients of the risks we’d also like to see the development of a SUDEP register.’

Tanya’s grandson, Johdi’s nephew, has recently also been diagnosed with epilepsy and the family are determined to make sure that he and all children living with epilepsy have a brighter future:
‘I don’t want Johdi’s death to become just a statistic and another person with epilepsy who died. It’s important to us that Johdi’s legacy be that other families never have to face losing someone to epilepsy.’

– Tanya, March 2021

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