Toddler who can not be cuddled by mum

2:59pm Thursday 1st March 2007

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MUM Tanya Moores knows that cuddling her baby son could cause him hours of pain as the slightest touch to his skin causes huge painful blisters.

Rhys, aged 18 months, suffers from epidermolysis bullosa (EB), a rare skin disorder which causes blistering at the slightest touch.

It is a genetic disease characterised by extremely fragile skin and recurrent blisters, and affects two out of every 100,000 live births in some way.

But rather than accepting her son's illness, which means he may not live beyond his 30s, Miss Moores is determined to help other parents of children with the same condition, and is organising a fundraising fun day.

All money raised on the day, which will be held at Ladybridge High School on Sunday, will go to the charity DebRA, which provides help and support for families dealing with the condition.

Full-time mum, Miss Moores, who has a healthy four-year-old daughter, Michaela, said: "I have had so much help from DebRA I just wanted to give something back to them. They've been fantastic and I'm not sure how I would have coped without them."

Miss Moores, and her partner, Rhys's father, Mark Williams, of Whalley Avenue, Johnson Fold, Bolton, knew something was wrong with their son as soon as he was born.

She said: "Rhys looked liked he'd been dipped in acid and his skin came off when he was injected in the neonatal ward.

"I was too terrified to hold him for the few days after he was born."

Since then Rhys's condition has not improved.

His clothes must be turned inside out as the hems rub his skin and a simple nappy change can bring him out in painful blisters.

Every morning Miss Moores has to spend at least an hour dressing her son's new blisters, a process she finds heartbreaking.

There is no cure for EB, but DebRA is carrying out constant research in the hope of finding one.

Miss Moores said: "It is very hard. There are some days when it's almost unbearable to see your child in so much pain.

"There are different kinds of EB and Rhys' is very serious, but there are people who have lived into their 30s and I'm praying that he will be one of them. Michaela is absolutely brilliant with her little brother. She helps me and is always looking out for him."

The fun day will include a car boot sale, and tickets cost £15. There will be a raffle, tombola, bouncy castle and games for children. Miss Moores has also recruited 10 male volunteers to be waxed for the charity.

For more information about the day, or to book a spot at the car boot sale, call her on 07707 733660.

l You can discover more about epidermolysis bullosa at the DebRA UK website: www.debra.org.uk