Health Inside the life of a 'Butterfly Child', whose skin tears with the slightest touch.

19:46  12 september  2017
19:46  12 september  2017 Source:   Mamamia

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The children who can't be cuddled: Born with a rare genetic condition called the ' butterfly disease' their skin is so fragile it breaks at the slightest touch . Brave children fight a painful condition called Epidermolysis Bullosa which means the skin blisters at every touch or graze.

Jonathan has one of the most severe cases of Epidermolysis Bullosa, a condition which means his skin can blister and tear at just the slightest touch . Happy family: Noémy, Tina and Jonathan have been through a lot together. Children with EB are known as ‘ butterfly children ’ due to their fragility – and

This year Tilly started primary school.© Facebook / The Cotton Ball This year Tilly started primary school. When Tilly Wilkes was born she was a perfect, healthy baby girl.

The only clue to something amiss was a small blister underneath her bottom lip, and a raw patch of skin on her thumb.

Her mum, Kelly Wilkes, simply assumed she’d been sucking it in the womb.

Doctors swaddled the infant up – like every other newborn in the maternity unit – but within 24 hours, baby Tilly had no skin on her hands or feet.

She was taken away for a biopsy, to be tested for "epidermolysis bullosa", her mother was beside herself.

"It was terrible," Kelly told Mamamia.

"I googled 'epidermolysis bullosa' and, of course, all the worst case scenarios come up."

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Little Gabrielius Misurenkovas is plagued by a rare condition that causes his skin to tear at the slightest touch . Kids with the condition are often dubbed “ butterfly children ” because their skin so delicate it can fall off at the slightest touch .

Butterfly girl: Five-year-old can't hug mum because of rare 'insect wing' skin condition. PAIN: Little Phoebe's skin tears off at the slightest touch [SWNS ]. The condition also effects her breathing as the skin inside her throat also gets damaged and tears away.

Epidermolysis bullosa, or EB, is a rare genetic disease that causes the skin to blister then peel at the slightest touch.

It's painful, lifelong and there is no cure.

Tilly is six now, the youngest of four children.© Facebook / The Cotton Ball Tilly is six now, the youngest of four children. "They call it the worst disease you’ve never heard of," Kelly explains.

Children like Tilly are sometimes known as "butterfly children" because their skin is as fragile as the wings of a butterfly. They're also known as "cotton wool kids".

The sweet names, hide the painful reality of a condition likened by some to living with third-degree burns.

There are only around 1500 known cases in Australia. It's so rare, doctors told Kelly she and Tilly would have to be their teachers.

"Any friction causes blisters, so she has to be bathed daily and have her blisters lanced," she explains.

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The twenty-year-old???s skin is so fragile that the slightest touch can deeply tear her skin and leave her with wounds that take several months to heal.THE CANADIAN PRESS/Chris She had completed one semester when she learned what every butterfly kid lives in dread of hearing — she had cancer.

MEET the inspirational teenager dubbed “ Butterfly Boy” whose skin is so delicate it falls away at the slightest touch . Children with EB are known as " butterfly children " because their skin is as delicate as butterfly wings.

"If don’t pop them, they get bigger and the risk of infection is high ... she’s fighting it all the time."

Tilly is six now, the youngest of four children. This year she started primary school.

In other words, her mum is in a constant state of worry and is rarely caught without her phone.

"It’s terrible, heartbreaking," Kelly says.

"It’s heartbreaking for my other kids as well because it’s a daily ritual. Every day she has to have blisters popped, every day she has to have a bath. But she's strong. And she's pushed through the pain every day.

"Some days are better than others and it can change within 24 hours."

The Wilkes family is dedicated to raising awareness of this little-known disease.

Their fundraising efforts have allowed The Royal Children's Hospital in Melbourne to employ a dedicated nurse to help kids with EB.

Every month there's a clinic at the hospital, so their parents can share new techniques and support one another.

On Saturday night at the annual Cotton Wool Ball fundraising event the EB Research Foundation - set up by Tilly's dad Corey and a group of family and friends - will have its official launch.

Tickets are sold out, but you can donate here, to help pay for much-needed research.

As for Tilly, she wants to be a vet one-day, her mother's dream is little simpler:

"I just hope she that happy girl, just as she is now. She's just a little girl with a big heart and a huge pain threshold. She’s very, very caring."

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