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

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."

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.

"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.

"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.

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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."