IMAGINE if your child could not run about, play games and explore like other children because of the agony it would cause.

No parent likes to see their child in pain and a situation in which a toddler cannot do the most natural things in the world without badly hurting themselves is every parent's worst nightmare.

But for Claire Griffiths, whose 18-month-old son Danny was born with a rare genetic skin condition, this nightmare is an everyday reality.

Little Danny was born with a severe form of Epidermolysis Bullosa (EB), a condition in which the proteins that normally hold the skin together do not function.

The skin and internal linings are so fragile that the slightest knock or rub can cause painful blistering, tearing and permanent damage, and there is currently no cure.

Claire, a teacher at St Wilfrid's Catholic Primary School, on Greenbank Lane in Hartford, had no idea about the condition until Danny was born.

She said: "When he was born the umbilical cord was wrapped around his leg and there was no skin on his leg at all - it was dreadful.

"Even the midwife didn't know what the condition was but specialists took him straight away."

She added: "We know far more about EB now ourselves and the support we've had from Macclesfield Hospital has been fantastic."

She explained that Danny's fingers were also badly affected by the condition and his nails came off fairly quickly.

She said: "The rest of him was perfect - it's only with him moving that you can see the deterioration within the last 12 months.

"A year ago his hands were fairly normal but now they're not - he has scar tissue from trying to pull himself up."

This brings Claire, who also has a three-year-old daughter Rosie who attends St Wilfrid's pre-school, to one of the main difficulties of looking after a child with EB and also one of the most heartbreaking aspects of the condition.

She said: "Until they learn themselves what they can and can't do, it's very difficult.

"The next two years are going to be the worst in the world - children want to be exploring and I don't want to stop Danny doing things."

While Claire is teaching, Danny attends a nursery where he is helped by a one-to-one carer who makes sure he is never left out of playtime.

Claire said: "His one-to-one is brilliant with him and, because his hands are sore, when the others are playing with sand she makes him bowls of jelly so he's not excluded.

"And when they're doing feet painting she wraps his bandages with cling-film and he can join in."

She added: "It's about making every day count."

Despite the devastating nature of the condition, Claire and the rest of the family are determined to stay positive and help Danny to get the most out of life.

Claire said: "I try to pull strength from Danny because he's so brave.

"He came home from nursery with all the skin off his fingers and he was crying, but the next minute he was off and playing - happy as larry and as cheeky as any other child."

Danny, Claire and her family have received a lot of help and support from DEBRA, a charity that funds vital research into EB as well as supporting families living with the condition, and the family along with the staff, pupils and parents of St Wilfrid's Primary School have in turn helped raise awareness and money for the charity.

The theme of the school's Spring Ball was butterflies, which is DEBRA's symbol because the skin of sufferers is as fragile as a butterfly's wing.

More than £10,000 was raised by the ball, which will go towards DEBRA, as well as towards purchasing an interactive whiteboard for all the children and software and laptops for pupils with special needs to make the school as inclusive as possible.