When Lachlan Woodward was born with no skin on his left leg, hospital staff assured his parents, Tagen and Darren, that it was just a birthmark and nothing to worry about.

Four days later, the Woodward's paediatrician told them the sad news - their son was suffering from the painful and debilitating genetic disease, Epidermolysis Bullosa (EB) for which there is no cure.

Life for the Woodwards and their energetic three-year-old at Little Mountain on Queensland's Sunshine Coast is fraught with difficulty and pain management. Mrs Woodward said it takes about an hour a day to change Lachlan's dressings and bandages that partially protect the youngster from damaging himself.

"When he was a baby we'd spend 90 minutes twice a day changing his dressings that cost us up to $2000 a month," she said.

"Changing the dressings and popping the blisters, especially the blood-filled ones are really painful. We were advised not to change the dressings in the bedroom because he was likely to have nightmares."

She said they try to keep Lachlan's life "as normal as possible" but the condition now covers his whole body except for his trunk and face because he's so active.

"He can't ride his tricycle very far because his feet get so sore and any area he knocks can be affected because the skin just sheers off," she said.

"I went through a stage of not going out because people would look at me like I was a child abuser but I just had to get over that. We're really blessed just to have him."

She thinks they are "really lucky" because they are able to dress Lachlan and pick him up under the arms. "Some poor parents can't even hug their babies because it's too painful."

Lachlan attends a day care centre two days a week under the watchful eye of the staff. "He knows which dressing goes on which blister and tells the staff if they're unsure," she said. "The children are fine around him but some adults worry that you can catch it.

"We hope he'll have a normal lifespan but there is so much unknown about it and that's why research is urgently needed."

Both Mr and Mrs Woodward have the EB gene so there is a one in four chance of any subsequent children acquiring the disease.

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