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Osteoporosis

Updated 30 April 2019

‘My heart is happy’ – Cape Town boy with brittle bone disease

“My condition doesn’t keep me down."

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 and conventions.

He’s now eight 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 has 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.

“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 (2) – and “has added spice to the variety we already have”, William says.

“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’s positive attitude is infectious. When the family was battling to raise funds for a motorised wheelchair last year, they launched a social media appeal.

Liam January and his family

The response was almost instant: donations came flooding in and within a week more than R45 000 had been raised.

Edwina says people often remarked on how small her bump was when she was pregnant but scans didn’t pick up any anomalies.  

Then, in her 23rd week, her gynae discovered Liam’s femurs were shorter than they should be. “He asked me if anyone in our family had short legs and I said no,” she recalls. “He never took it further.”

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 continuously.”

Liam January

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 admits. “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 in Rondebosch, Cape Town, 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,” 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 fullest and even has a spell of modelling under his belt. Liam, Isabella and Kyle were featured in a campaign for a sleepwear range of UK brand Mini Boden in October last year.

“It was fun,” he says.

Liam January

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 little Liam will always find something special to pull out of his hat.

More about Liam's disease

Osteogenesis imperfecta or brittle bone disease is caused by a defect in the gene that produces type 1 collagen, a protein essential in bone creation.

One in 20 000 babies worldwide are affected and cases range from mild to severe.

Some sufferers can have loss of hearing, heart failure and spinal cord problems.

Symptoms include bow legs and arms, loose joints, multiple broken bones and respiratory problems.

Extra source: www.healthline.com 

Image credit: Supplied

 

Ask the Expert

Healthy Bones

Tereza is the CEO of the National Osteoporosis Foundation and worked as a Nursing Sister in the field of Osteoporosis for 18 years prior to her appointment with the Foundation. She used to be the Educational Officer for the Foundation and co-wrote the patient brochure on Osteoporosis. Read more

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