‘22 broken bones in 17 years’: Teen, Will Niven, suffers with multiple bone cysts in his skull

Adelaide teen Will Niven was born with a genetic condition that has altered his life — but he now faces an even more intense challenge.

Will Niven, like most 17-year-old boys, just wants to play sports.

His supportive mother, Wendy Mitchell, would encourage her son to get involved but there came a point where she knew he couldn’t play anymore.

“Will is the sort of kid that can pick up a ball … and he’ll just be good,” Will’s sister Katie Niven told The Advertiser.

“Of course, Mum wanted to put him through as many sports as possible, but every time he played a sport … he’d break a leg.

“He had to give up.

“How many times do you put a kid through sport until it’s too much?”

Will lives with McCune-Albright syndrome — a rare genetic disorder affecting bones, skin and hormones — that he was diagnosed with at a few months old.

Will Niven, 17, was born with McCune-Albright syndrome, and couldn’t play sports, Pedal Prix is the last sport he played. Picture: Supplied by family

Since his diagnosis, Will, who lives in Clarence Gardens, has broken at least 22 bones and has undergone multiple surgeries to fix them.

“It’s affected his growth plates,” his 21-year-old sister said.

On October 24, Will noticed a soft spot on his head after having a persistent headache.

He went to the Women’s and Children’s Hospital where scans revealed a bone cyst — three weeks later, another scan revealed three more.

“We all thought he was instantly going to die,” Ms Niven, who lives in Hyde Park, said.

Eventually tumours were tested and it was discovered they were benign, however they have left a “massive hole” in Will’s head and a “large blood filled lump”.

“He’s lost part of his skull to this … it’s quite scary to touch, you put your hand there and it feels like nothing, it feels like sponge,” Ms Niven said.

Will Niven spent his eighth birthday in hospital after breaking another bone. Picture: Supplied by family

Will’s scans revealed multiple bone cyst in his skull. Picture: Supplied

Will’s team of doctors decided he would undergo an experimental injection.

The series of injections will “switch off” the osteoclasts in Will’s skull to allow the bone to rebuild.

After four injections, which Will has already begun, he will continue to undergo injections every six months.

“It’s awful … it’s not easy, lots of hospital trips, lots of appointments,” Ms Niven said.

Despite undergoing this, Will continues to work as an apprentice welder.

“It’s incredible,” Ms Niven said of her brother.

Ms Niven said, due to the experimental nature of the medication and the rarity of Will’s condition, they are wanting to seek second opinions and consultations with doctors interstate and overseas.

The constant appointments and hope for further investigation are a financial burden to the family.

Ms Niven set up a GoFundMe if anyone would like to donate to Will to support this.