The story of Trowbridge schoolboy Ashley Gover, who is losing his sight after being diagnosed with a rare eye condition, has reached out to other sufferers in the UK and across the globe.
The John of Gaunt pupil, 11, is suffering from Leber’s optic neuropathy (LHON) and has suddenly lost the central portion of his vision.
Although he has 10 to 20 per cent of his peripheral vision, it is thought this could disappear over time, leaving him blind.
After last week’s Wiltshire Times report, his mother, Louise, 34, was contacted by Lissa Poincenot from San Diego, California. She has a Google alert set for Leber’s optic neuropathy, because her 22-year-old son suffers from the disease.
The alert was triggered when Ashley’s story appeared on the Wiltshire Times website.
Mrs Gover said: “She messaged me, via Facebook, and put me in touch with a professor in Newcastle who is studying treatments and cures for the disease.”
She then emailed the professor and he replied to say he was happy to keep Ashley’s details, including his genetic codings, on the trial register.
She said: “They are looking for something to slow the disease down, which could help them with a cure in the future. I am so happy that there is research that we can help fund.”
Mrs Gover, who is considering running the Bath Half-Marathon as a fundraiser, added: “At the moment I wouldn’t want Ashley to trial the drug, because he is too young and you don’t know what the effects are. But one day I hope we can go up to Newcastle.”
Mrs Poincenot put Mrs Gover in touch with three UK families also affected.
Mrs Gover said: “One is a 16-year-old girl, which is rare, from Eastbourne [East Sussex] and her local Specsavers has also been raising money for her. Her mother is keen to meet up, because her auntie lives in Frome.
“I didn’t think there was any research in the UK, so I am delighted that somebody, somewhere, is looking into the condition and we can hear of other people’s stories.”
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