Michael
Michael was 24 when he died. He had autism with social difficulties and went to a special school.
He was a quiet lad whose life was only just starting to improve and flourish. Michael’s mum died after a long illness in October 2022, so he had some very tough times. He was a typical lad, always with his phone, online, and he loved gaming and anything military.
Michael had the first of very few seizures when he was 13 although they became more frequent towards the end of his life.
On rare occasion he would wake up late in the morning with aching limbs, feeling exhausted. He was on medication when he died in July 2024 but wasn’t on the dosage prescribed by his neurologist. He received a lot of support in many things in his life and this included his work in a café – where he was able to work completely independently, taking orders. It was his first time in paid employment, and he was very successful in making friends with local customers. He thoroughly enjoyed his job and loved the cafe and the people he worked with. His brothers and I were very proud of his successes. Michael asked if he could increase his working hours, which was an indication of how much he enjoyed his job.
Fiercely independent, Michael was given the opportunity to live more independently in a supported living flat under the 24-hour transition care. He also had access to 1:1 inhouse care support.
Michael was found dead in his flat on a Friday night, having last been seen alive on the previous Tuesday. I assumed he was receiving the best of care. I never really believed Michael could die from his seizures. There were children in his special school who had numerous seizures every day so we just accepted that he could have them, especially as the number of seizures he had was low by comparison (one every six months or so, although he did have more in the last months of his life).
I don’t believe the care providers in Michael’s life truly understood SUDEP and I wonder if this contributed to his death.
Michael will always be loved by his dad, brothers and friends.
Keith (Michael’s Dad)
