Cotton wool baby: how Lewis is living life in the fast lane
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Cotton wool baby: how Lewis is living life in the fast lane

Just hours after Lewis Mataczyna was born in Canberra, he was flown to Sydney wrapped in cotton wool.

He was diagnosed with a rare and serious form of epidermolysis bullosa, which meant his skin could tear apart at the slightest touch or bump.

Cherie, Sophia (7), Lewis (9), and Henry Mataczyna.

Cherie, Sophia (7), Lewis (9), and Henry Mataczyna. Credit:Sitthixay Ditthavong

Since then his life has been a lot different from other kids his age, often missing out on the everyday joys of childhood.

He has had frequent operations including procedures to open his throat so he can eat and drink and he is very susceptible to infections.

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For his parents, Cherie and Henry, finding the balance between protecting him and taking calculated risks is a part of everyday life.

Lewis Mataczyna has a severe form of epidermolysis bullosa

Lewis Mataczyna has a severe form of epidermolysis bullosa

And in the last few months Lewis, 9, has found a new - high octane - lease on life.

He began kart racing earlier this and is already winning races and finding a new confidence he never knew he had.

Mrs Mataczyna had Lewis by C-section after a very healthy pregnancy.

The first indication something was wrong came after seeing he was born with skin missing across his face, scalp and his heels.

"I thought I'd given birth to a boy in a bubble," Mrs Mataczyna said.

"We weren't allowed to touch him, he was in a incubator and it was really scary for us.

"I was very lucky that we had an amazing team of paediatricians.

"They diagnosed him from text book, it was that rare."

Lewis Mataczyna has a rare and serious form of epidermolysis bullosa.

Lewis Mataczyna has a rare and serious form of epidermolysis bullosa.

Mr and Mrs Mataczyna spent months learning how to care for Lewis and how to apply his dressings before they were allowed to take him home from the hospital.

Since he was born their lives have been dominated by caring for Lewis and helping him live the most fulfilling life possible.

"For nine years it's been intense, there's no rest at all," Mr Mataczyna said.

Lewis' parents described it as an incredibly cruel disease.

But Lewis is cognitively perfect and his pain threshold is extremely high.

"It's really hard going in terms of dressings, we bathe every second day," Mrs Mataczyna said.

"That takes a couple of hours and it's really painful for Lewis - having a bath is like acid.

"We have to do dressings two to three times a day - because they are open wounds you can't keep a dirty bandage on them."

Five months ago Lewis got behind the wheel of a go kart for the first time, and his parents say he's now a changed boy.

"He got on the track and within the first 20 seconds he crashed, I thought 'oh no'," Mr Mataczyna said.

"But he dusted himself off.

"And within three months he was the number one in Canberra within under 12s."

Seeing his potential and enthusiasm, Canberra Kart Racing Club gave him a kart on permanent loan.

While Lewis often misses out on birthday party invitations and can't take part in the rough and tumble of the playground, when he's on the track he feels just like the other kids.

His parents hope he can be an inspiration to others.

"He deserves an opportunity just like any other child in the community to participate," Mrs Mataczyna said.

"Just through some simple adjustments he can do pretty much everything.

"When he puts on his racing suit they don't treat him any differently."

Daniella White is a reporter for The Canberra Times with a special focus on health issues

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