By ALESHA CAPONE, BRIMBANK LEADER OCTOBER 02, 2014
Tilly Wilkes, who was born with Epidermolysis Bullosa (EB) which is an inherited connective tissue disorder causing blisters in the skin and mucosal membranes. Tilly with her mother Kelly, and siblings Harvey 11, Kurtis 9, and Lexi, 7. Picture: Rob Leeson.
LIKE many children, little Tilly Wilkes loves to dance.
But if the Taylors Lakes three-year-old skips and spins too much, the skin beneath her feet hurts and she cannot walk the next day.
Tilly has Epidermolysis Bullosa – or EB – a rare genetic condition which means her skin will painfully blister and peel at the slightest touch.
Tilly’s mother Kelly Wilkes said within 24 hours of being born, her daughter’s fingers and feet became “red raw”.
Nowadays Tilly’s dressings must be changed every day and she sees a dermatologist monthly at the Royal Children’s Hospital.
Although she has faced a lot of adversity at such a young age, Tilly is a friendly and happy girl.
“Only when we do dressings she gets a bit sad,” Ms Wilkes said.
“We just have to be wary, like when she wants to go on a slide we have to put a blanket down.”
Ms Wilkes said she has been touched at the way many people have banded together to help Tilly and a not-for-profit group called Dystrophic Epidermolysis Bullosa Research Association Australia, which offers support to families of patients.
Tilly’s father Corey, along with friends, founded the Cotton Ball last year to raise funds for the association.
A group of generous netballers at YMCA Derrimut, where Ms Wilkes plays once a week, will also soon host their own fundraising tournament.
Team member Coz Habben started the tournament last year to raise funds for the family of a fellow netballer, whose daughter Mia had leukaemia.
Fortunately, Mia has since recovered, so this year the tournament will raise funds for next year’s Cotton Ball.
The netball is at 8.30am on Sunday, October 26, at YMCA Derrimut with a sausage sizzle. Cost: $2 entry to YMCA and $60 per team.
Details: facebook.com/netballtournament