Headteacher reveals heartache following her son’s sudden death
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 suffered sudden unexpected death in epilepsy (SUDEP) at the family home last year.
Now his mum, Kathryn Jackson, head teacher at St Mary's Endowed Primary, in Roughton, 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 know doctors have this big dilemma as to whether they should tell patients and carers because it could cause distress and the worry is they will live in fear of their child or loved one dying.
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'But, having been through it, it's a horrible, horrible feeling to know you could have done something.'
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.
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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 explained Keir, who studied a degree in psychology and had hopes of embarking on a medical career, worked unsociable hours away from home as a hospital porter. But she revealed she only found out about the condition by doing an internet search following his death.
'I'm convinced he might have survived if we had been told of the risks. But because we didn't know these things we couldn't put anything in place and he died.
'Keir was also on another form of medication which we have since found out aggravates seizures, so if people knew more then perhaps they could manage their lifestyles.'
Ms Jackson revealed she hopes to set up a support group in north Norfolk to help other families affected, with the nearest currently in Bury St Edmunds. 'We have a child who has just been diagnosed with having epilepsy here (at the school) and it is scary,' she said. 'But it is so much better to 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...'
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. Local parents are invited to get involved. Anyone with epilepsy from other schools interested in attending can contact the school on 01263 761368.