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.