We did not have a funeral for Jared – we held a celebration of life events. Over 200 people attended. We played his favourite songs, gave out his favourite sweets and forget-me-not seeds.
We never imagined how epilepsy would affect his life. Every aspect of his life had to be planned, such as where he was going and who with. Sticking to a strict medication regime and being aware of dangers that people would not even think about, such as drinking alcohol, cooking, crossing roads, and moving furniture with sharp corners.
As the years passed, we noticed that Jared’s short-term memory was slowly declining and he physically suffered; with every tonic-clonic seizure his shoulder and his knee dislocated. Even then he got back up and tried to live the best life he could.
We knew about SUDEP but never in a million years did we think it would happen to him.
Jared was found dead in his bed on 24th August 2021, aged 20, a week before his 21st birthday.
Jared’s death devasted many people. When he died family, friends and the local community laid flowers under a tree in the local park where he used to sit with his friends.
We did not have a funeral for Jared – we held a celebration of life events. Over 200 people attended. We played his favourite songs, gave out his favourite sweets and forget-me-not seeds. We made a memory tree, and to end the celebration we let off 200 purple balloons. Purple was his favourite colour.
Epilepsy took Jared but we fight on. When Jared died, we raised £8,600 for Epilepsy Research UK and we will continue to raise money in his memory.
– Jane, December 2021