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.