Never giving up – Fazeel's story

GOSH patient sat next to Paul O'Grady

Fazeel has epidermolysis bullosa, also known as EB. It causes the skin to become very fragile, and any trauma or friction to the skin can cause painful blisters.

"I have this motto to never give up," says 11-year-old Fazeel. "It is a really severe skin condition but I don’t let that stop me.”

There are three types of EB, but Fazeel has dystrophic epidermolysis bullosa, which affects both his inner and outer body.

Growing up with EB

Fazeel has had almost 20 operations since he was born. One or two times a year, he has an operation on his oesophagus where a balloon is put into the throat to make it bigger so that food doesn't get stuck. He has also had surgeries on his hand and stomach.

Daily life can be a challenge for Fazeel. He needs to have his dressings changed and finds some tasks – like taking a bath and eating – difficult.

Making the most of life

But Fazeel doesn't let his EB stop him from taking part in the activities he enjoys – cricket, making videos, trampolining and karate.

"There are many things that EB children can’t do, but then I try to make my way around them and do something that an EB child can do, like riding a scooter," he says.

"I’m really good at trampolining. I can’t really do the massive tricks like a front flip and back flip but that doesn’t really bother me that much."

Visiting GOSH

Fazeel has been coming to Great Ormond Street Hospital (GOSH) every six months since he was born.

“When I’m older, I need to leave GOSH, but I really don’t want to. It’s one of the best hospitals,” he says. "They give you WiFi, there’s a PlayStation, there’re loads of games and there’s an arts station.

"Since I was born, and the doctors found out I had EB, they’ve been helping and they taught my mum how to do dressings."

Inspiring others

He has recently put together a presentation about EB to teach others about his condition.

"It's kind of like a motivational speech to encourage people that it’s not really that bad with EB and to follow your dreams and not just to say 'I’ve got EB I can’t do it'," he says.

"I used to hate talking about it, but then I got over it and I’m making the most of it now."

Fazeel's next aim is to pass his GCSEs and A-levels in a few years' time. His time at GOSH has inspired him to become a doctor when he grows up to help find a cure for EB. 

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