Local boy with brittle bone disease defies the odds

Liam January. (PHOTO: Supplied)
Liam January. (PHOTO: Supplied)

Doctors warned his parents he didn’t have long to live – most babies with his condition died shortly after  birth. But Liam January isn’t the kind of kid to follow norms.

He’s now nine years old and in many ways is like any other boy his age.

He’s obsessed with superheroes, loves playing games on his Xbox and enjoys watching movies and being with his friends. He’s also proved every doctor wrong, his proud parents Edwina (41) and William (47) say – although that doesn’t mean life is without challenges for Liam.

When he was three days old he was diagnosed with brittle bone disease or osteogenesis imperfecta, an incurable congenital condition characterised by fragile bones. He’s had six fractures and there’s constant danger of him falling from his bed or wheelchair.

But William, a sales representative, says the family has adapted to Liam’s needs and the household is a happy one – mostly because his son is such an upbeat little guy.

“He’s a godsend. Yes, he’s my first boy and I’d have liked him to be a soccer player but we still have great fun together.”

Liam January. (PHOTO: Supplied)

“My condition doesn’t keep me down,” Liam says when we meet him at the family home in Retreat, Cape Town. “My heart is happy.”

Liam is the Januarys’ middle child – they also have Isabella (12) and Kyle (5). His positive attitude is infectious. When the family were battling to raise funds for a motorised wheelchair last year, they launched a social media appeal. The response was almost instant: do-nations came flooding in and within a week more than R45 000 had been raised.

Edwina says people often re-marked on how small  her  bump was when she was pregnant but scans didn’t pick up any anomalies. Then, in her 23rd week, her gynaecologist discovered Liam’s femurs were shorter than they should be.

When her baby was born it was immediately clear something was wrong. “His legs were bow-shaped and every bone in his body was soft,” Edwina says.

“He cried continually.”

Doctors sent him for X-rays and three days later came the devastating news: Liam had osteogenesis imperfecta type 2, the severest form of brittle bone disease.

“It was like living a nightmare,” Edwina says. “I didn’t know how I was going to cope.”

But her little man was a fighter. He was talking in full sentences by the time he was one and when he was four he started attending Vista Nova School in Rondebosch, a school for children with disabilities. He’s now in Grade 2.

Liam’s physical development is stunted and his body is frail but he’s well aware of what he can and can’t do.

“If he sees there are a lot of wild kids around, he removes himself from the situation,” Edwina says.

He knows one knock or fall could break another bone “and he’s very afraid of that”. In winter extra precautions are required because even a slight cold could lead to an infection in his lungs, which are underdeveloped.

Still, he’s living life to the full and even has a spell of modelling under his belt. But for now Liam has his sights set on becoming a professor – or better still, a magician.

“I can make people disappear,” he declares.

“You put a blanket over them and when you pull it off, they disappear.”

No doubt resilient Liam will always find something special to pull out of his hat.

Read more:

Mutant sheep bred to fight lethal childhood brain diseases

We live in a world where facts and fiction get blurred
In times of uncertainty you need journalism you can trust. For only R75 per month, you have access to a world of in-depth analyses, investigative journalism, top opinions and a range of features. Journalism strengthens democracy. Invest in the future today.
Subscribe to News24