By NATALIE GALLENTI
FATHER of four Corey Wilkes still remembers the phone call that turned his world upside down.
After a night of celebrating the birth of his fourth child, the Taylors Lakes resident woke to a phone call from his distressed wife, Kelly, saying something was terribly wrong with their baby daughter Tilly.
After wrapping her newborn in a blanket, Mrs Wilkes was horrified to see little Tilly’s red raw hands.
Not even a day old, Tilly was rushed to the Royal Children’s Hospital Intensive Care Unit
where she remained for four weeks, while puzzled doctors tried to diagnose her severely blistered skin.
Testing eventually revealed Tilly has Epidermolysis Bullosa, commonly referred to as
EB.
“It’s confronting, it’s terrible. We were devastated, we couldn’t believe it,” Mr Wilkes said.
EB is a rare genetic disease causing the skin to blister at even the slightest touch. Youngsters who suffer from the condition are often referred to as butterfly children because their skin is said to be as fragile as a butterfly’s wings.
There is no cure for EB.
The Tullmarine business owner admitted his initial thoughts were “why her”, but 18 months on and the close-knit family has learnt to deal with the condition and has a very positive outlook.
“It’s been a traumatic time, my wife, how she copes I have no idea,” Corey said.
“Every day she has to pop blisters, every night she has to pop blisters.
“She (Tilly) can be in a lot of pain. Right now she’s fantastic, when she’s happy the whole
house is happy.”
EB hasn’t stopped “tough Tilly”, as her father affectionately calls her, from doing the things every toddler loves to do. Despite having to endure immense pain every evening, Tilly has a radiant smile and big blue eyes that would melt any heart.
Now her proud father is determined to raise vital funds for the disease that affects 1000
Australians.
Together with family and friends Mr Wilkes launched The Cotton Ball – a gala event to raise money to go towards establishing a Victorian-based nurse to help sufferers and their families living with EB.
All proceeds of the black-tie event to be held next year will go to DEBRA Victoria, a group
that offers support to families living with EB.
DEBRA also uses donations to fund local and international research into a cure for the disease, with the aim to work towards a life free from pain for sufferers.
“Tilly is the passion and the reason why we’re doing it, but we just want to raise awareness.”
To donate or to book a ticket to The Cotton Ball, visit www.thecottonball.com.au
