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‘Sons inspired us to do York 10K’
TWO young boys who suffer from rare forms of severe epilepsy have inspired their mums to attempt this year's Jane Tomlinson 10K run.
Rhiannon Wilkinson's four-year-old son Lewis, has Doose Syndrome, a form of epilepsy which means he can have up to 100 minor seizures a day and is prone to drop seizures, causing him to fall suddenly to the ground.
While drugs have so far proved ineffective, Lewis is on a strictly-measured high-fat food regime known as Ketogenic Diet, which is reducing the number of seizures he has.
Rhiannon, 35, from Hemingbrough, said: “This diet would appear horrific and unhealthyto most parents, however to us it has been the most effective treatment as Lewis' seizures have reduced from 200 plus per today to about 30 on a good day and maybe 80 on a bad day.
“Day-to-day living is hard as Lewis requires constant supervision as there is no warning that a seizure is coming and there have been many occasions when Lewis has had a drop seizure and fallen and hit his head, resulting in several trips to A and E to have his head glued back together.
“We want to raise awareness that about 30 per cent of (child) epilepsy cases are resistant to drug treatment.
From experience the Ketogenic Diet has proved to be the most effective treatment so far for Lewis.”
Lewis’s friend, three-year-old Samuel Dale, also from Hemingbrough, suffers from Tuberous Sclerosis Complex (TSC) which means he too has epilepsy as well as battling brain tumours, kidney disease and learning delay.
His mother, Jo, said the youngster will almost certainly require a kidney transplant before he is 11.
She said: “Sam is a happy little boy who is currently moderately affected, however we are not sure what the future holds.
“We are currently in training along with four close friends for the York 10k Jane Tomlinson Run for All in aid of our sons charities, Tuberous Sclerosis Association and Matthews Friends. Our aim is to raise as much money as possible but also to promote awareness of our sons’ conditions.
To help either Rhiannon or Jo raise money, go to www.justgiving.com/alice-wilton/
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