Schoolgirl Maleah Pegg is speaking up for everyone with brittle bone disease – by telling the whole world about her condition in a moving video that’s already attracted tens of thousands of viewers.
The nine-year-old, from Hackenthorpe in Sheffield, has a condition known as Osteogenesis Imperfecta type 3, which has already caused her to break more than 30 bones in her body.
Maleah has fractured her legs hundreds of times, as well as breaking her skull twice and injuring her back, ribs, shoulders and arms.
But the schoolgirl, a Year 5 pupil at Emmanuel Junior in Waterthorpe, hasn’t let her condition hold her back. Instead she dreams of competing as a Paralympic swimmer, and practises the sport regularly.
Now Maleah has made a YouTube video, called Me, Myself and OI, in which she talks about the genetic disorder and how it affects her life.
Just two weeks after being uploaded, the clip has been seen more than 18,000 times by viewers across the globe.
By popular demand, translations have already been made into Spanish and Portuguese, with French, German and Italian versions on the way.
Maleah’s mum Abi, aged 30, said the video was ‘inspiring’, adding: “I love her and the way she can do anything. We had no idea it would go so crazy.”
The youngster was born with the incurable disease, but has defied doctors who gave Abi and Maleah’s dad Matt a poor outlook.
“They didn’t give her a very good prognosis,” said Abi, who runs her own photography business. Matt, 33, is a business manager at BT.
“We were told she wasn’t going to be able to breathe and that we should abort.
“But we’ve always been fortunate to be in a situation where we can provide anything she’s needed.”
Maleah attends Sheffield Children’s Hospital every 12 weeks, where she is given medication to help build up her bones.
She has also undergone surgery to have metal rods fitted in her legs, without which she would suffer more fractures just by standing up.
“She’s doing very well at the moment - she hasn’t had a big break since last year,” said Abi.
Maleah uses a wheelchair and walking frame to get about, and the family have recently had an accessible room and ramp installed at home.
In the video, she explains that because of the disease her little brother Zach, four, is the same height as her, while older brother Kai, seven, is taller already.
Abi said: “Matt inspired her to make the video. She wanted to explain to people in a really short, simple way what it was like to have her bones. It’s difficult and frustrating for her because sometimes people don’t understand it.
“She really wants to be a Paralympic swimmer. She goes to the Seven Hills swimming pool and her teacher there desperately wants to train her. She’s so speedy fast in the water. It’s hard sometimes to watch her doing these things, all parents are protective, but I’m never going to hold her back.”
The video backs Wishbone Day, an international event on May 6 to raise awareness of Osteogenesis Imperfecta. Supporters are encouraged to wear items of yellow clothing on the day.