Amamoor teen's brave fight for life against rare disease
LIKE the hardwood timber he is named after, it takes a lot to cut down a spirit as strong as Amamoor's Jarrah Jones.
Jarrah has been told the people at Queensland Children's Hospital will miss him, after more than 380 days battling Wilson's disease, which affects only one in 30,000-40,000 people.
The 14-year-old's fight for life began last year when doctors could not explain why his face had begun to slacken and his speech began to slur.
Then came admission to the hospital's neurological ward, where he was diagnosed with the condition, which leaves the body unable to dispose of excess copper.
All his life, copper levels have been building up in his body.
Then the high levels began to damage his brain and liver, forcing him to take time off from Gympie State High School for treatment in Brisbane.
The disease had by then left him immobilised and unable to speak.
But all is looking a lot better now, his family has announced.
"His smile will be missed in the rehab ward," his friends at the hospital have also said.
Family friend Paula Lindholm, of Nambour, said Jarrah had gone from a "breath of fresh air" to being almost non-responsive.
She told the Sunshine Coast Daily that doctors had warned the medication might make him worse before he got better.
And it did, she said.
"His mind is fully functioning but his body is sometimes completely non-co-operating," she said.
She told of the family's torment during the long months when Jarrah's eyes would not open and he was paralysed.
The intensity of the challenge Jarrah faced and the suffering he endured prompted Ms Lindholm to start a GoFundMe page, which gathered $5000 in its first eight days.
At last report it had 119 donors and had raised $10,825.
Donations at www.gofund me.com/f/jarrahs-wheelchair-accessible-van will go towards a $50,000 wheelchair-accessible van for the family.