FRIENDS and family of a teenager with a rare disease that affects a handful of children in the UK have gone on an annual walk to raise awareness of the disease.
Kyran Richmond, from Chilton, County Durham, suffers from Juvenile Batten Disorder, a rare strain of a brain condition for which there is no treatment or cure.
Now 18, Kyran was diagnosed with the rare disease, which affects between 30 and 40 children in the UK, in 2011.
On Saturday, Kyran’s friends and family marched in Roseberry Topping, North Yorkshire, to raise money for adaptations to his family home, as he can no longer manage the steps to enter the garden.
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They organize the walk close to Rare Disease Day, February 28, to raise awareness of the disease, which mainly affects the nervous system, causing epilepsy, and sufferers eventually lose their sight, the ability to walk, talk and eat.
When the march was last held, Kyran, who attends The Oaks School in Spennymoor, was able to attend the party.
Yet the young football fan, passionate about Newcastle United, has since deteriorated and couldn’t make it on Saturday.
Kyran’s mother, Debbie Richmond, said: “The walk went really well. We haven’t done it for a few years so it was quite difficult for some people.
“Unfortunately, Kyran couldn’t come this year. He deteriorated a lot during the lockdown. Before, he could walk a little, but now he uses his wheelchair all the time and he has lost a lot of mobility.”
Due to the lockdown, he was unable to access services and physiotherapy for several months, which affected his mobility and meant he now uses an electric wheelchair.
Thirty people took part in the march, raising several hundred pounds.
Another fundraiser is set to take place on Friday, March 4, featuring longtime supporter Tess Tickle. The event at Cooundon Club is sold out.
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