Beau's story

Six-year-old Beau is a true cowboy. When he grows up he wants to be a professional bull rider.


Born and raised in a small town near Goulburn called Taralga, Beau has a passion for rodeos and particularly enjoys the thrill of watching the bull and sheep riding events.

When Beau grows up he wants to become a professional bull rider. His dreams are big but so is his journey ahead. Beau has a rare degenerative genetic disorder known as Mucopolysaccharidosis IVA-Morquio Syndrome (MPS IVA).

The condition causes various bone and skeletal abnormalities and is estimated to affect just 3000 people worldwide. Sadly though, there is currently no cure.

Beau’s family received the devastating diagnosis just after his first birthday. For Beau, his condition means he has short stature as well as issues with his eyes, ears, respiratory system, hips, legs, back and hands. He has already needed 14 operations, countless MRIs and a host of other specialist appointments.

Normally, the condition worsens with age but thankfully for Beau, doctors had a plan. When he was three, doctors started Beau on enzyme replacement therapy as part of a clinical drug trial and it has turned his life around.

Every Tuesday, Beau and his family embark on the 500 kilometre round trip from his hometown to the Hospital for his six hour infusion. It is a huge journey but one that his Mum, Sam, says is just part of life now.

“The Hospital has become our second home. We have been there once a week for the last 142 weeks but our surgeons have all done brilliant jobs and we love our nurses. The staff have made a pretty horrible experience not only bearable but lots of fun.”

While brave Beau’s treatment will be ongoing — he is expected to need between 30-50 surgeries in his lifetime — for now the future is optimistic.

“The Children’s Hospital at Westmead has not only given us hope, but has given Beau a future” said his Mum.

On Friday November 17 The Children's Hospital at Westmead will be packed with entertainment for Radiothon to raise money for children like Beau.


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