Jacob

Jacob’s favourite pastime, like many other 13-year-olds, is playing video games.

In fact, he’s your typical teenager, fiercely independent and confident, only ever inhibited by one thing, his statue.

Jacob is 121 centimetres tall, compared to an average 156 centimetres for boys his age.

His twin brother is nearly 6 feet tall.

“Being different from other kids is hard at times. Sometimes people stare or make snide remarks which is hurtful, but I guess that's more their issue than mine,” he said.

Jacob was born with achondroplasia, the most common form of skeletal dysplasia or dwarfism, affecting around one in 20,000 babies born in Australia.

An average child typically grows about 6 centimetres each year, compared to just 4 centimetres for those with achondroplasia.

“Everyday jobs are more difficult and I do fatigue more easily than my peers,” Jacob said.

“Things like getting onto chairs, into 4WDs, even to putting on socks are harder. Having shorter legs and arms can make tasks trickier but I can generally work out a solution,” he added.

In early 2023, a new drug called vosoritide came on the market. It works directly on the growth points of the bones - epiphyses - to promote new bone growth in patients whose bones are still growing. Vosoritide can help children with achondroplasia grow an extra 1.5 centimetres each year, and potentially an extra 15-20 centimetres across their lifetime.

Jacob was among the first to take part in an Australian-first multi-disciplinary clinic at the Queensland Children’s Hospital, educating patients and their families about vosoritide.

“I just learnt what it does for you and how it helps, and also how to do [administer] it,” Jacob said.

“I can continue to take the medication until my growth plates close. I've been told this will be around 3 years as I'm already 13. I reckon it's worth a try as any additional height or additional length to my arms will help with daily tasks,” he said.

The clinic’s team of endocrinologists, nurses and physiotherapists not only empowered Jacob with the information about vosoritide; through training and support he learnt to administer his daily injections himself, at home (68 and counting!)

“I just thought that it’d be better if I was in control, because I knew what I was feeling,” he said.

“My Mum and Dad have offered to assist but I'd rather be in control of the needle. It hurts a little but the pain doesn't last long. I'm focused on the potential benefits, so it's worth it,” he added.

Jacob’s preparing to start Grade 9, studying the standard subjects but also pursuing drama and business as his electives.

As well as being a mad-keen gamer, Jacob loves fishing and driving the buggy at his Uncle’s farm.

He’s looking forward to seeing the benefits of taking his daily vosoritide injections, and hopes to educate other young people on administering the treatment themselves.

Read more about vosoritide treatment at the Queensland Children’s Hospital