Rhys 2 Disney
To be losing your sight must be frightening enough - but when you’re seven-years-old, it’s almost unimaginable.
Yet that’s the prospect facing brave Rhys Clapton, whose sight and mobility are both deteriorating because of a rare genetic condition.
Rhys, of Guisborough, has been diagnosed with Spinocerebellar Ataxia Type 7 - a genetic defect which degenerates the brain’s coordination centre, the cerebellum.
Doctors fear he may lose his sight within a year. He also suffers increasingly from balance problems - “the wobbles” he calls them - which are worsening too.
Now supporters are raising funds to get Rhys and his family to Disneyland Paris for a dream holiday while he can enjoy it properly.
Rhys’ diagnosis last December followed increasing concerns about his vision and lack of balance. Once a normal lad who loved to play football and ride his bike, life has taken a cruel turn for the WWE wrestling-loving youngster who, despite his problems, stays happy and keeps smiling.
But mum Jeanette and dad Richard, a mechanical fitter at the Boulby Potash Mine, admit the diagnosis came as a body blow.
Part-time cleaner Jeanette, 39, said: “It was absolutely devastating, especially because it was just before Christmas.
“The doctor had only ever seen three people with it. And the younger you are when you get it, the worse it is.
“We’re hoping he doesn’t get worse, but we can see as the days go by how little things are going.
“It’s not just his eyes, it’s his balance too. Now it’s a waiting game now to see what happens.”
Rhys, who lives at home with his parents, brother Lucas, 10, and sister Ellissa, four, used to attend Belmont Primary School. But with his eyesight failing, he now attends Sunnyside Academy in Coulby Newham, where there is specialist provision for his needs.
He’s eight next month and with such a lot to cope with, you could forgive him for wanting the world for his birthday - but that’s not Rhys’ style.
Jeanette said: “He’s a very modest boy. You can give him an Argos or Toys ‘R Us catalogue and he won’t ask for anything - he just says ‘it’s OK, I’ve got enough toys’.”
But one thing the family would love to accumulate are happy family memories.
Jeanette said: “We normally go to places like a Haven park, which Rhys loves, but Disney would be amazing - a dream come true.
“We were told in December to make as many memories as we can this year for him to see, and that’s what we’ll try and do.
“He’s such a happy little boy. I don’t think he understands the situation fully and I don’t want to go into detail.”
Rhys 2 Disney
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|Event Date||29-05-2016 9:30 am|
|Event End Date||29-05-2016 6:00 pm|
|Cut off date||27-05-2016 6:00 pm|
Route Plan - 14 March 2016.pdf
Route in Middlesbrough - Sheet 1 - 14 March 2016.pdf
Route in Middlesbrough - Sheet 2 - 14 March 2016.pdf
Sponsorship form R2D 2.pdf
Sponsorship form R2D.pdf