Tilly may be sensitive but she still loves a laugh
When Corey and Kelly Wilke’s fourth child, Tilly, was born on Valentine’s Day last year everything seemed normal. But it soon became clear that something wasn’t right.
“We wrapped her as you do with a normal baby,” says Kelly. But within just 24 hours “there was no skin on her hands. She was just screaming.”
With her tiny body covered in what resembled third degree burns, Tilly was rushed back to hospital and put on a morphine drip. And after extensive testing they were told that baby Tilly had the rare skin condition Epidermolysis bullosa or EB.
EB is a rare genetic disease whereby the skin blisters and peels painfully at the slightest touch. EB children are often called ‘cotton kids’ or 'butterfly children',.because their skin is said to be as fragile as a butterfly's wings.
It affects about 1000 people in Australia in varying degrees. At best, EB can be mildly uncomfortable, at worst it can be fatal.
While it may not look like it, Tilly is actually one of the lucky ones. The form of EB she suffers from is not considered life threatening - in fact technically it's deemed "mild". But still her wounds make her more prone to potentially deadly infections.
To avoid that her parents have to undergo a painful daily ritual of popping blisters and cleaning her sores with salt and bleach.
“Imagine every night every morning putting pins in your daughter, popping blisters, you put yourself in that position, it’s terrible,” says Tilly’s father Corey. “You never ever want to see your child suffer in any way.”
The Wilkes say Tilly has brought them closer together as a family and helped put things into perspective. None of them dare complain about getting a paper cut knowing what Tilly goes through every day.
“The one on her face here was a simple cold and the wiping of her face,” says her dad. “Friction, blister and then it just spreads.”
According to Dr David Orchard from the Melbourne Royal Children’s Hospital “This will be an ever present problem for her every day. But she is in every other way normal and if we can find a way that she can be comfortable in her clothing and footwear and things like that then hopefully she can live a relatively normal life.”
“She’s very happy, for what she goes through. Very happy little girl.” says Kelly.
“She’s incredibly tough… tough Tilly.” adds Corey. “She’s an amazing little girl and she’s changed our lives for the better.”
In response to this life-changing experience and in appreciation for the EB support group DEBRA Australia, Corey has initiated a black-tie Gala Dinner known as the Cotton Ball to raise funds.
For information on the Cotton Ball and EB, head to http://www.thecottonball.com.au/
And for more of Tilly’s story, catch up with The Project's story here.