Jared

Jared tragically lost his life to SUDEP in August 2021. In this piece, Jared’s mum Jane discusses his rich and colourful life, his journey with epilepsy, and the fundraising his family and friends are doing to support research in Jared’s memory.

Jared Grayson Exley was born on the 2nd of September 2000. Jared was an only child and had a very close relationship with me, his Mum.

Jared had lots of friends, he loved life and always looked for the good in everyone. He was the go-to person if anyone had any problems. Everyone who knew Jared adored him. Jared was a laid-back kind of guy with a dry sense of humour – he was hilarious without even trying. He loved stand-up comedy and making people laugh.

Jared was quirky, he dressed how he wanted to dress and loved nothing more than trawling around the charity shops for a bargain. He loved piercings, and one of his goals in life was to have tattoos and grow a beard. Jared loved music and went to many concerts and festivals with his friends. He loved Marvel and fantasy films such as The Lord of the Rings, The Matrix and Avatar. He loved nothing more than a conspiracy story.

Jared did very well educationally, achieving all his GCSE’s and his BTEC Level 3 in science at college.  He wanted to be a radiologist and had started a degree in biochemistry.

Jared was 17 when he developed epilepsy, and we still don’t know what caused it. I first noticed the absence seizures, then the complex partial seizures and shortly afterwards he had his first tonic-clonic seizure at college. He had lots of scans and EEGs tests but none revealed any abnormalities. When he was diagnosed it was a shock to us all, but naively we thought he would be ok with medication. Jared tried all kinds of different medication and combinations but they did not work and his seizures continued. He had no warning or awareness of when he was going to have a seizure. He had about three tonic-clonic seizures a month as well as multiple complex partial seizures and absence seizures. The seizures used to exhaust him and it sometimes took him days to recover. But Jared used to pick himself up and often said he would not let epilepsy control his life. Jared’s amazing friends stuck by him and all learnt what to do if he had a seizure.

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

Through the incredible efforts of our supporters over the last twelve months, we are delighted that Epilepsy Research UK was able to make over £1.3 million available for our 2021 grant awards.

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We’ve said it before and we’ll say it again – none of the research we fund would be possible without the generosity and commitment of our supporters. Here are some of their incredible stories.

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Do something amazing today and make a donation to Epilepsy Research UK. Your money will go towards driving and enabling life changing, life saving research projects which help people with epilepsy.

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