Amamoor's Jarrah Jones is faced with the possibility of life in a wheelchair.
Amamoor's Jarrah Jones is faced with the possibility of life in a wheelchair. Contributed

Boy faced with life in wheelchair, fighting baffling illness

A RURAL teenager is faced with the prospect of life in a wheelchair, after going 12 rounds with an illness that affects about 40,000 worldwide.

This time last year Jarrah Jones was hit with a disease so rare, it baffled doctors and the surgical team at the Queensland Children's Hospital.

The illness, Wilson's disease, attacked his liver and brain, and transformed him from a "breath of fresh air" to non-responsive.

He's been bedridden for much of that time and is still on medication to handle the pain, unable to communicate or control his wheelchair.

Jarrah Jones and his mum Nathalie Brouard.
Jarrah Jones and his mum Nathalie Brouard. Contributed

"I'd certainly never heard of it (Wilson's disease), and the doctors told me it was a first for them too," his mum Nathalie Brouard said.

"So it's been a learning curve for all of us. The past eight months have been very challenging.

"He is still a happy kid and his spirit is there. He has his moments, his sad days. Days where he grieves for the life he once had.

"This time last year he was set for the King of the Mountain race in Pomona, now he's unable to walk. We're going through physio rehabilitation at the moment.

"The doctors say worst case scenario is that he'll never be the same, but we are taking it day by day."

A 'positive' Jarrah Jones meeting Maroons forward Jai Arrow at the Queensland Children's Hospital.
A 'positive' Jarrah Jones meeting Maroons forward Jai Arrow at the Queensland Children's Hospital. Contributed

His family have been staying at Ronald McDonald House, 150km away from their home in Amamoor, south of Gympie.

While her "social butterfly" of a son lights up when he gets visitors, she said there was no place like home.

"The Amamoor community is fantastic but it's very difficult for his friends to visit. They can't just drive down. But it makes his day when they do," she said.

"Being back at home will be great. Everyone is asking when he can make it. They're all so supportive."

Ms Brouard said it was still an indefinite wait for her little man to come home as her house was being made wheelchair-friendly.

While that cost can "possibly" be aided by the National Disability Insurance Scheme, funds for a wheelchair-accessible van cannot be covered.

A GoFundMe page has been created towards that, with a goal of $50,000 in sight.

Already almost $4000 has been pledged in less than 24 hours. To donate, search Jarrah's Wheelchair Accessible Van.



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