This week is Epidermolysis Bullosa (EB) Awareness Week – a week dedicated to raising awareness, creating hope, and promoting the need for a cure on behalf of those living with EB.
EB is a rare genetic disease that causes very fragile skin, where friction, bumps or knocks to the skin can result in painful blisters and wounds. Children with EB are often called butterfly children because their skin is as fragile as a butterfly’s wings.
Born with Recessive Dystrophic Epidermolysis Bullosa, twelve year old Ghadir is one of hundreds of children living with EB in Australia.
Ghadir’s mum, Iman says that living with the condition has been extremely hard on Ghadir and the family.
“EB is a very challenging condition with limitations for Ghadir. It’s difficult out in the community because many people don’t know or understand his suffering.”
“His interaction with others is difficult because they don’t know how to handle him, so he is often overlooked and he will sometimes ask questions as to why he isn’t ‘normal’. It also dictates what we can and can’t do as a family,” Iman said.
Despite its challenges, treatment and management of Ghadir’s condition at the RCH has allowed him to participate in many of the same activities as his siblings and friends.
“The RCH has been absolutely marvelous. From day one they have been there for Ghadir and us as a family. From their treatment of Ghadir, to the clinical trials and the clinics they run, they go above and beyond.”
“Ghadir is a very active and energetic young boy. We’re so grateful that he is able to play with his brother and sister and be part of a basketball team with his friends.”
“He does require protective clothing in case of bumps or falls which in turn hampers his participation and effort, but he is very passionate about it.”
As for Ghadir, he’s certainly not letting his condition hold him back.
“I would like to thank everyone at the RCH who have shown nothing but care and compassion towards me. As for living with EB, I’d like to say it is only skin and that it won’t stop me being the best person I can be, now and in the future.”