Jack’s political influence
The 13-year-old was inspired to write to MP Stuart Andrew for more research into SUDEP – sudden unexpected death in epilepsy – following the death of his Aunt Helen in March 2006.
The Pudsey MP was so touched by Jack’s account; he contacted Mr Burstow, who wrote to reassure him that the government was committed to supporting high-quality epilepsy research to “help us save more lives”.
In a letter copied to the teenager, Mr Burstow said: “I agree with Jack that research is very important in reducing the number of people who die from epilepsy.
“We already know a lot about epilepsy, but much more remains unknown. Research can fill these gaps in our knowledge and change the way that health professionals work. This means that treatment, care and people’s quality of life are improved and unavoidable deaths are prevented.”
Mr Burstow said he was “very sorry” to hear about Jack’s aunt. He could “understand that he wants to make sure that everyone with epilepsy has access to the right information and treatment”.
He also urged the youngster to contact his local primary care trust if he wanted to find out what epilepsy awareness programmes were available. Jack, who lives in Horsforth, Leeds, said he was pleased to have received replies from his MP and the minister. “Losing my Auntie Helen was very upsetting,” he said. “She was really nice and kind-hearted. I wrote to my MP because I don’t think there is enough national awareness about epilepsy and I’d like more people to know about the risks. I thought if I could get my MP interested and make the Department of Health aware, it would really get into the public knowledge and it might save more lives.”
Jack, whose cousin Robert, 11, also has epilepsy, has been a regular at the national conference of Epilepsy Bereaved – the only UK charity dedicated to funding and conducting vital research into SUDEP.
Jack’s mum Fiona said she was “very proud” of her son’s letter-writing campaign and hoped it would inspire other people to get in touch with their MP.
“Jack was only six-years-old when his aunt died, yet he managed to stand up at her funeral and read a poem in front of 200 people,” said Fiona, 43, a school cook.
“He is very passionate about epilepsy and the need for people to do more about it. He writes all the letters himself and feels really good when he gets a reply. I think if a young lad can do all this, so can many adults.”