LITTLE Rhys Williams is all smiles — but he has to live with a painful skin condition.
The three-year-old is one of just 5,000 people in the UK who have epidermolysis bullosa (EB), a rare genetic disorder which causes blistering at the slightest touch.
Charity DebRA supports people with the condition, who have a high risk of developing skin cancer and whose life expectancy is shortened by 30 to 40 years. Now the organisation has opened a base in Deansgate, Bolton, to help local sufferers like Rhys.
His mother, Tanya Moores, is delighted. She said: “It is fabulous, it’s really good news.
“DebRA has been a big help and given us a lot of support.
“I hope awareness can be raised so people know about EB.
“It is good to know DebRA is here and fundraising because it means we are one step closer to finding a cure.”
Miss Moores lives with Rhys, her partner Mark Williams, and her six-year-old daughter, Michaela Moores, in Whalley Avenue, Johnson Fold.
The 25-year-old said: “He can’t do as much as normal kids, he knows when to stop and limits himself most of the time.
“We have to be careful with his skin, he heals quite quickly but does scar.
“When he’s sore I can’t pick him up but we still manage to have kisses and cuddles.
“I’m wary all the time, you just have to watch more or less everything he does.
We’ve just decided to live every day as much as we can.” DebRA provides welfare and support for sufferers and their carers and funds research into treatments.
The DebRA shop in Bolton is open from Monday to Saturday between 9am-5pm and Sunday 11am-4pm.
Tony Eckersall, the charity’s fundraising manager in the North, said: “We have several people in the region with EB.
“They lead normal lives but live with pain and disability. We wanted a base in Bolton to support local sufferers and raise awareness.
“Our main aim is to find an effective treatment.”
Pauline Padfield, shop manager, said: “We want to raise as much money as possible.
“We hope to arrange fundraising events and have been talking about setting up a support group.”
Volunteers and donations are desperately needed for the shop.
All the money raised in Bolton will help support people in the region.
To find out more contact the shop on 01204 385622 or visit debra.org.uk.
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