RHYS Williams, 11, from Bolton was born with the incurable condition recessive dystrophic epidemolysis bullosa. An incurable rare skin condition caused by genetics.
For any mother watching their child in pain is more than difficult but for Tanya Williams, 33, from Bolton every day is challenging. Her little boys suffers from a rare and incurable skin condition which causes him constant pain. This condition is called recessive dystrophic epidemolysis bullosa.
Recessive dystrophic epidemolysis bullosa (DEB) is a skin condition caused by genetics. The condition is often referred to as the butterfly syndrome as those who have the disorder are very fragile. Rhys’s skin and internal tissue will blister or tear at the slightest knock or bump leaving him with painful injuries.
Rhys has suffered with his condition since birth and has prevented him being a ‘normal’ little boy. He can’t go out and play with his friends, go on holiday or even attend class mates birthday parties.
The 11 year old, who has a love for school, is wheelchair bound as he is unable to straighten his legs due to the fusing of skin at the back of his knees. This fusing has also occurred in his fingers which has caused his hands to web.
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The youngster is under full-time care by his parents who have to change his bandages three times a day to prevent nasty infections.
Rhys has recently found a passion in wheelchair football, a game which allows him to socialise with others like him, making him feel like a ‘normal’ little boy. The only thing that is now holding him back is his need for a special wheelchair.
One of these chairs costs just over five thousand pounds including VAT.
Rhys has been sharing a wheelchair at the club and has been wanting his own. Community group Biker Family Support, a group who help charitable causes set up a page to help raise £2,500 in an aim support Rhys’s passion.
His mother says ”since Rhys has joined his football club it has give more confidence and given him more to live for. Before (wheelchair football) it was just school and Xbox but now he is getting out and making new friends, he just loves it.”
”The plan was to raise half of the money needed for his new chair,” his mother said.
People who have heard Rhy’s story have donated generously and Rhys has raised £5,086, more than double their wanted amount. This now means his wheelchair can be paid in full.
Tanya added ”it’s crazy to think we only started this a couple of week ago. We actually met Carl and Julie (founders of the Biker Family Community) on a family holiday with my youngest. When they met Rhys they just fell in love with him and they started up three weeks ago. It just went viral.”
The family also set up a poker afternoon at Queen Elizabeth pub in Great Lever where ‘people where just throwing money in.’ They came out with just over £800 on that one night ‘ I was so overwhelmed.’
They family have got tickets to comic con next weekend where comic con have said ”because Rhys is a real hero he can lead the super hero parade.” Comic con are also doing a raffle for him on the day.
His mother has plans to shave her head in January with her friends to continue raising awareness and money for charities that support Rhys’s condition. Her husband is looking into a sky dive in the near future.
His mother said it is ”nice to see him do something which he enjoys and is safe for him.”
Rhys has ”lots of fundraisers in the pipeline which are waiting to be confirmed.”
The estimated life span of someone with this condition is 15-32. Rhys will be starting high school next September where he hopes to continue playing football.
if you would like to donate money to help Rhys then click the link here