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Matthew’s story – Not letting his disability hold him back

By February 12, 2024No Comments

There are approximately 34,000 Australians living with cerebral palsy – the most common motor disability of childhood. Australia has the lowest rate of cerebral palsy at birth in the world, with one in 700 children. 

Cerebral palsy is caused by damage to the developing brain often in utero. It is a complex physical disability which can affect a person’s posture, balance and ability to move, communicate, eat, sleep and learn. 

Matt with mum Debbie and assistance dog Molly at AYAH

Born prematurely at just 28 weeks, Matthew weighed 900 grams and was in intensive care for several months. He was hospitalised until he was almost two years old and has been in and out of hospital ever since. 

“When he was young, the doctors put his condition down to pre-maturity, but in fact he has a rare syndrome which includes cerebellar atrophy, chronic lung disease and intellectual delay,” said his mother, Debbie.   

One of the challenges for Matthew when he turned 18 years of age, was that he had outgrown any respite care facilities for young people with disability. 

Thankfully, the Adolescent and Young Adult Hospice (AYAH) located in Manly opened its doors to patients in February 2023 and it has provided much-needed residential respite care for Matthew and his family. 

“At AYAH, I can spend quality time with Matt, and we don’t have to worry about anything. If he’s not well, there’s a multidisciplinary healthcare team that understands his condition and I have full confidence they can treat him, so we don’t require a hospital visit,” said Debbie.  

With his assistance dog, Molly, not far from his side, Matthew enjoys spending time at AYAH, catching up with friends and participating in activities with art therapy being one of his favourites. Being at AYAH also allows Debbie time to relax and connect with other parents who, she says, understand and support each other so she doesn’t feel alone. 

Matt concentrating at Boccia

Matthew is now 24 years old, and his parents focus on taking one day at a time, always ensuring he leads a full life and enjoys lots of different experiences. 

Matthew loves to play Boccia, a sport he took up 10 years ago, and was a member of the Para Tokyo Olympic training squad. Boccia was originally designed for people with cerebral palsy and is now played by people with a wide range of disabilities. Matthew was recently awarded silver in the Boccia Australia National Champions and is currently ranked third in Australia for his classification.

The family have travelled extensively and even though Matthew is confined to a wheelchair and requires oxygen to fly, they have been to America, Asia, South Africa, Europe and the UK where he’s kissed the Blarney Stone! 

Matt’s travels have taken him to Disneyland

Debbie proudly says that even though Matthew is a man of few words, he’s friendly and will often start a conversation with people while travelling, many of which have developed into long-distance friendships.  

Boccia tournaments have also meant that they have travelled around Australia, and they will be attending the Paralympics in Paris to watch some of his friends play. Unfortunately, Matthew’s Boccia classification isn’t recognised yet in Paralympics, but they hope it will be soon.  

Patients and their families stay at the AYAH free of charge, so if you would like to contribute to enhancing patient experience in the future, please donate here.

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