FRIENDS and family of a teenager with a rare disease which affects a handful of children in the UK have completed an annual walk to raise awareness of the condition.
Kyran Richmond, from Chilton, in County Durham, has Juvenile Batten Disorder, a rare strain of a brain disease for which there is no treatment or cure.
Now 18, Kyran was diagnosed with the rare condition, which affects between 30 and 40 children in the UK, in 2011.
On Saturday, friends and family of Kyran walked Roseberry Topping, in North Yorkshire, to raise funds for adaptations to his family home, as he can no longer manage the steps to get into the garden.
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They hold the walk close to rare diseases day, on February 28, to raise awareness about the condition, which mainly affects the nervous system, causing epilepsy, and sufferers eventually lose their sight, ability to walk, talk, and eat.
The last time the walk was held Kyran, who attends The Oaks school in Spennymoor, was able to attend to see the party off.
However, the young football fan, who is passionate about Newcastle United, has deteriorated since then and was unable to make it on Saturday.
Kyran’s mother, Debbie Richmond, said: “The walk went really well. We haven’t done it for a couple of years so it was quite tough for some people.
“Unfortunately Kyran couldn’t make it this year. He deteriorated quite a lot in lockdown. He had been managing to walk around a bit before but now he uses his wheelchair all the time and he’s lost a lot of mobility."
Due to the lockdown he was unable to access services and phsyiotherapy for a number of months, which has affected his mobility and means he now uses an electric wheelchair.
About 30 people took part in the walk, raising several hundred pounds.
Another fundraiser is set to take place on Friday, March 4, with long-time supporter Tess Tickle. The event at Coundon Club is sold-out.
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