My name is Tilly Layne Wilkes, I am 9 years old and I’m the youngest in my family. I have a brother named Harvey and two sisters named Kurtis and Lexi.
I have EB Simplex, so I don’t have EB as bad as others, but everyone that has EB lives in lots of pain all the time. Some of my friends have EB worse than me and some of them have gone to heaven.
When I was a baby, I went through a lot of pain with blisters and sores all over my body and as I have grown, I’ve learnt to live with EB, and know what I can and can’t do, so I can manage it a little bit better. Still, every day I have to soak in a bath and pop my blisters and bandage the bad sores.
It was tough when I first started school. My skin tore off my bottom from sitting in the chairs and I get blisters on my hand from writing. I have to be careful that I don’t get knocked in the playground, because my skin will tear off and it really hurts.
In summer it’s a lot worse! My skin gets really bad and I find it hard to do the normal things that my brother and sisters do!
A lot of the time I have big sores on my face. People stare at me in public and at school. I do get embarrassed, but it’s who I am. I tell them I have a rare skin disorder; I was born with it and it’s just something that I have to live with.
My family, with close friends, started EB Research Foundation who are now EB Research Partnership (Australia). They work really hard to raise money for a cure for all the kids who live with EB.
I hope we find a cure soon to stop our pain.
~ Tilly Wilkes