12:03a.m. 11th November 2007

| By Carolyn Tucker

Lachlan Woodward, with his mum and dad Tagen and Darren, was born with a rare skin condition where even a gentle touch will cause the skin on his left leg to blister and scar. Photo: Cade Mooney.

Some parents would like to keep their children in cotton wool, seeking to shelter them from life’s hard knocks.

Others simply do not have a choice.

At 21 months, Caloundra’s Lachlan Woodward is a sweet, strong-willed and active little boy, eager to explore his surroundings and test the boundaries.

As with all toddlers, that means taking the odd tumble, but for Lachlan the smallest bump can have dire consequences. He is a “cotton wool baby”, born with the rare disease Epidermolysis Bullosa. Even the slightest touch can cause his fragile skin to blister and scar.

About 1000 Australians have been diagnosed with the condition, but Lachlan’s case is unique.

There used to be 27 recognised sub-strands of EB in the world.

Lachlan’s case makes it 28.

His left leg is worst affected but the skin on his hands, feet, knees and elbows is also hypersensitive and showing signs of damage.

Every morning his mum, Tagen, spends about 45 minutes wrapping Lachlan’s leg in special dressings, and a further three hours each day checking for signs of blisters.

When one appears it has to be pricked immediately to prevent it from rapidly ballooning, which would increase its healing time and result in more severe scarring.

Lachlan’s dad, Darren, said it was an around-the-clock job.

“What Tagen has had to put up with and what she’s done since Lachlan was born is just incredible,” Darren said.

“I can’t prick the blisters and I’m slowly doing the bandages but she’s like a nurse, even though she’s never had any training.

“Her attitude is absolutely amazing.”

Tagen and Darren knew nothing of the condition before Lachlan was born and despite their best efforts to become instant experts, they are still living with many unknowns.

Relatively little research has been conducted on EB, and Lachlan’s case hasn’t even made it into the literature.

“It’s just day by day,” Darren said. “He may get better, he may get worse – we just don’t know.”

The challenges that flow from this disease are across the board – physical, emotional, social and financial.

Strangers in the street stare at Lachlan’s bandages and glare at his parents, suspicion etched on their faces about the cause of his “injuries”.

Few friends and family members are prepared to babysit, worried about what could happen on their watch.

Lachlan must be covered from head to toe when he is outdoors in the harsh Queensland sun, because his delicate tissue-like skin is particularly susceptible to skin cancer.

How he will cope with school is a looming concern and most sports are obviously out of the question.

As with other EB sufferers, Lachlan may eventually become wheelchair bound when years of blisters and scarring on his feet take their toll.

All parents fear for the future of their children, but Darren and Tagen have more to fear than most.

However, far from seeking sympathy, this remarkable young couple has taken it all in their stride, saying others bear far greater burdens and they are blessed to have this much wanted and otherwise happy and healthy child.

They are, however, frustrated by the federal government’s refusal to even acknowledge the existence of EB.

For a person with this incurable disease, the medical dressings used to protect their skin are as vital as insulin to a diabetic, yet these bandages are not subsidised through the Pharmaceutical Benefits Scheme.

Approaches to the federal government have proved futile.

The dressings are considered ancillary because they fail to meet its legal definition of “drugs or medicinal preparations”.

Public hospitals provide bandages to people with EB on a case-by-case basis, but there are no guarantees and there is certainly no uniform approach.

Nambour hospital has said it may be able to supply Lachlan’s dressings in the future, but for the past 21 months Tagen and Darren have been footing the bill themselves, with some assistance from the national support group, Dystrophic Epidermolysis Bullosa Association Australia, or DebRA.

Debra receives no government funding and exists solely on donations from the public, its scant resources directed to helping struggling families instead of research to find a cure.

Tagen and Darren say it is tough enough dealing with the daily demands of EB without the government adding insult to injury.

“I can’t understand why the government wouldn’t want to know about it,” Tagen said.

“The cost of bandages and creams is nothing compared to the cost of having people with this disease in hospital.

“I think they should be saying ‘here’s your dressings – what else can we do to help you cope with this’.”

In New Zealand, the dressings are provided to EB sufferers free of charge, and this couple is determined to continue lobbying governments until the same occurs here.

“We’re just a small piece in a big pie with EB, and other people are much worse off than we are,” Darren said.

“Hopefully, one day researchers will find a cure, but in the meantime we will continue to do what we can to convince the government to give all EB people this assistance.”

Butterfly Day, to raise awareness about EB, is on November 23.

For more information about EB or to make a donation, visit www.debra.org.au