https://www.gosh.nhs.uk/news/never-giving-fazeels-story/
Never giving up – Fazeel's story
22 Aug 2018, 12:10 p.m.
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.
Little heroes

Young people donate tissue samples to unlock mysteries of arthritis
A new groundbreaking study led by researchers at the University of Birmingham, Great Ormond Street Hospital, University College London and Birmingham Children’s Hospital has revealed important clues into what is driving arthritis in children.

Toddler doing well after receiving newest gene therapy available on NHS
A toddler with a life-limiting and life-threatening rare disease is the youngest to be treated with the newest gene therapy available on the NHS at GOSH.

The summer edition of ‘The Look Inside’ is out!
As part of the Children’s Cancer Centre (CCC) showcase in June, we launched the new edition of our children’s magazine ‘The Look Inside’. Pick up your copy when you're next at the hospital!

Joe Wicks with a GOSH patient and their brother
600 children and young people from Great Ormond Street Hospital (GOSH) and University College London Hospital (UCLH) teamed up to try new sports and get active.