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Headteacher fundraising for epilepsy in memory of son

A grieving mother who lost her son in his sleep revealed he could still have been alive today if she had been warned his epilepsy put him at risk of sudden death.

Keir Jackson was just 22 when he died of sudden unexpected death in epilepsy (SUDEP) at the family home last year.

Now his mother, Kathryn Jackson, head teacher at St Mary’s Endowed Primary, in Norwich, is organising a fundraising day at the school to raise awareness of the condition.

Looking forward to the event on March 24, she said: “We are a small school, so the fundraiser is not going to make a huge difference to the research, but the awareness is really important because one thing that affected me is I didn’t know.

 "I can’t express the feeling that you have that you didn’t know and we think if only I did this.

And she added: “If it just could save one life...”

It is estimated that SUDEP happens to one in every 1,000 people with epilepsy. There is no way of predicting who will be affected. However, some people with epilepsy have a higher risk than others.

Not taking epilepsy medicines as prescribed, being a young adult (in particular male), having seizures when alone, and drinking large amounts of alcohol are all believed to increase the risk.

Ms Jackson revealed she hopes to set up a support group in north Norfolk to help other families affected by SUDEP, with the nearest currently in Bury St Edmunds. 

The awareness day at St Mary’s will include an assembly with a talk from a nurse who specialises in epilepsy, as well as a fundraising concert.