It is thanks to the generosity of kind donors like you that Zane receives the specialist care he needs. Please make a tax deductible donation by 30 June at rchfoundation.org.au/ongoingcare

As a toddler, Zane was lively and chatty, but often slow to reach his milestones. Then, when he was five years old, he started complaining of sore muscles all the time. Parents Ann and Robert didn’t suspect anything was seriously wrong, but when Zane became more unwell and started losing weight, they rushed him to The Royal Children’s Hospital (RCH).

In the emergency room Zane couldn’t climb up onto the bed. Concerned, the clinicians asked Ann and Robert questions about Zane’s mobility. It was then that Zane’s parents heard the term muscular dystrophy for the first time – his suspected diagnosis. Ann and Robert were shocked and within a moment, the family’s life was turned upside down.

 

“It was devastating, and we didn’t want Zane to have to go through it,” said Ann.

Duchenne muscular dystrophy (DMD) is a progressive disorder that affects all the muscles in the body, including those used for breathing and the muscles that hold the spine straight, leading them to became progressively weak over time.

There is no cure, and the best Zane and his family can hope for is to slow down the inevitable progress of this muscle weakening disorder. This means Ann and Robert have had to watch their son struggle more and more to do everyday things like walk, hang out with his friends or even shower himself.

When his diagnosis was explained to him, Zane remembers feeling confused.

“I just thought, well, none of the other kids have this. Everyone else can run at school. Why can’t I?” he said.

 

Now 16 years old, Zane has attended the RCH every month for the past 11 years. He relies on the Neuromuscular Clinic at the RCH, which helps families coordinate his appointments over many medical disciplines.

The Neuromuscular Clinic is the largest and most advanced paediatric neuromuscular clinic in Australasia. It is staffed by highly skilled and experienced specialists who are dedicated to providing best practice multidisciplinary care. And it’s all done in one day. Although it can be exhausting for Zane and his mum, who may have to spend up to six hours in appointments, it’s worth it.

Because DMD affects so many parts of the body, Zane has a huge range of specialists looking after him. He sees a neurologist, a cardiologist and a respiratory doctor because the disorder affects the muscles used for breathing. He also has an endocrinologist to treat his osteoporosis.

“It’s amazing. This place is state of the art. They are specialists specifically in this field, and that’s really reassuring when you’re a parent coming with a child with a condition like muscular dystrophy. You need to feel reassured and know that the people that are here know what they’re doing,” said Ann.

Most patients with DMD are unable to walk by the time they are 12, but Zane and Ann credit the care he has received at the RCH with the fact he can still walk a little at 16.

 

“We wouldn’t be where we are today without the RCH. Zane wouldn’t be walking at home. He wouldn’t be as confident as he is in dealing with his disability, if it wasn’t for the hospital providing us with that support, and guidance, and showing us how we can manage this.”

Zane is also grateful to the doctors and nurses who are helping him on his journey.

“I feel safe and welcome, and I know that they’re going to take care of me.”

It is thanks to the generosity of kind donors like you that Zane receives the specialist care he needs. Please make a tax deductible donation by 30 June: rchfoundation.org.au/ongoingcare​