Published September 20, 2012
She is Victoria's very own butterfly baby.
Tilly Layne Wilkes's skin is so delicate it can be damaged by the slightest touch, like the wings of a butterfly.
The toddler has to live her life wrapped in cotton wool after being diagnosed with a rare skin disorder called epidermolysis bullosa.
But after a 19-month struggle with the condition, her parents, Kelly and Corey, have nicknamed her 'Tough Tilly.'
"She's got to be handled with care, as much as she doesn't want to be, she wants to be like every other child her age," Corey Wilkes said.
Tilly's condition, which affects just 1000 Australians, was evident within 48 hours of her birth.
Nurses had swaddled her to sleep. The next day, skin was coming off her arms and feet and she was in incredible pain.
She was rushed to the Royal Children's Hospital in Melbourne and spent four weeks in intensive care.
A biopsy test revealed she had EB simplex. The genetic mutation affects the glue that keeps the skin structures together, making it sensitive to the slightest friction.
"She was on morphine for the first month of her life to deal with the pain," Wilkes said. "We do dressings every day, treating blisters and putting ointments on. She has salt baths and bleach put in her bath every morning to prevent infections."
Last week, a simple cold was a setback. She began to wipe her nose and mouth, causing the skin to wear away.
Even just the act of standing can lead to blisters on her feet. She can't walk yet, but has defied doctors who said she would never crawl.