Baby lives a dream (From Warrington Guardian)

Baby lives a dream

A BABY whose skin blisters and peels off from everyday contact became a handsome prince last week.

Danny Griffiths, who suffers from a rare incurable disease, was dressed as the fairytale character as he attended his first pantomime.

"His sister was going as a princess," said mum Claire, 34.

"She insisted Danny was the prince and that he had a crown and everything."

Genetic disorder epidermolysis bullosa could kill one-year-old Danny by the time he is 40.

The condition affects about 5,000 people in the UK and most die from skin cancer.

When Danny was first born he was put on a cushion and his parents were not allowed to hold him.

But last week Claire and Matt took their son to see Peter Pan at the Lyceum Theatre in Crewe.

"You tend to hold back a bit in crowds, but apart from that it was fine," said Claire, a part-time primary school teacher.

When Danny was born last year the umbilical cord had become wrapped around him and taken the skin off his right leg.

Now he has to wear a knee pad on his good leg, elbow pads, a tight elasticated T-shirt and tights to prevent irritation.

Danny will be unable to do things such as brush his teeth because his gums would blister.

But he is learning to talk - a favourite word being hiya - and learning to walk in his baby walker.

"More areas are blistering now that he's rolling around and causing more damage to himself," said Claire.

"There have been a few times when he's taken all the skin off."

Earlier this year the family, of Bessancourt, Holmes Chapel, told how they suffered from disapproving looks and comments in shops.

Claire said passers-by still asked if she had dropped Danny. "I don't want to have to stop and explain to everyone about it," she said. Danny still visits the national centre for EB at Birmingham Children's Hospital. Nurses also come to the family's home twice a week and spend about an hour and a half dressing his wounds.

Danny is cared for two days a week at the Nu Nu day nursery in Holmes Chapel and one day by his grandparents.

His healthy three-year-old sister Rosie also helps to look after him.

"She tells people that he's got special skin and you mustn't touch him," said Claire.

"When there's a blister she tells us that we need to get the needle."

Since Danny was born his parents have helped to raise about £30,000 for Debra, which funds research into the disease.

The donation included £18,000 from Matt and his work colleagues and £2,000 from an event at the Red Lion, Goostrey.

On Sunday The Swan pub in Station Road, Holmes Chapel, will raise more cash at a Christmas carol event.

To donate to Debra call Matt or Claire on 01477 549220 or visit www.debra.org.uk