THE family of Craigavon teenager Owen Tohill have been devastated to learn that the 13-year-old could lose his sight if he doesn’t get a special eye operation.
Owen, who suffers from autism and asthma, has been diagnosed with keratoconus, a rare eye condition which affects one in every 2,000 people.
With Owen being a visual learner, his mother Michelle said his sight was vital to him and she has been shocked the health service aren’t in more of a rush to treat the condition that could leave him blind.
Michelle spoke to the ‘MAIL’ this week in order to raise awareness about the disease.
She said: “He was diagnosed last August. We took him to a private clinic after he’d started saying, “I’m going blind, I can’t see that”.
“He was also saying that he was seeing two of things. With Owen being autistic it’s quite difficult for him to explain what he’s experiencing. He gets very frustrated when he can’t read things.”
Keratoconus is a degenerative disorder of the eye leading to the cornea thinning to a more conical shape than its normal gradual curve. It can cause distortion of vision, double vision, streaking and sensitivity to light.
Michelle added: “We’ve found the standard of care from the health service to be poor. Their normal procedure is to fit contacts and watch how things progress. I thought there would have been more of a rush.
“With Owen having autism he wouldn’t be able to wear contacts. They’d be too much for him.
“If the condition deteriorates they suggest a corneal transplant, but again, that would be too much for Owen.
“This is why we’re going down the route of cross linking. This is a more suitable procedure for Owen and will arrest the development of keratoconus and in many cases reverse some of the effects which is highly significant because keratoconus can ultimately lead to blindness.”
13-year-old Owen is a former pupil of Ceara and now goes to Drumcree College. He has one older brother - Jamie (19) - and one older sister - Jade (14).
His mum said: “Because Owen is a visual learner his sight is so important to him. He knows there’s something wrong with his eyes and he knows he could go blind.”
Of the procedure, which it’s hoped can save Owen’s sight, his mother said: “Cross linking is only available in some trusts, even though it isn’t that expensive a procedure (between £4,000 and £5,000).
“We’ve been turned down twice by the health service. It’s a case of funding rather than them not being able to do it. We’ve decided to go private and get the cross linking procedure done as soon as we can.”
To that end a fundraising night is taking place in Goodyear Sports and Social Club on Friday, May 4. However, Michelle said she has been blessed with generous friends and family and they are already well on the way to finding the money needed for the operation.
Michelle said: “It’s not about the money. I’m lucky to have good friends and family who have supported Owen. I’m confident we’ll have the money for the operation.
“The reason we’re doing this is because it’s important to raise awareness in case other families are in the same situation.”