Coast teenager Jarrah Jones has been struck down by a disease that affects only one in 40,000 worldwide.
Coast teenager Jarrah Jones has been struck down by a disease that affects only one in 40,000 worldwide. Contributed

Gympie teen struck down by 1 in 40,000 disease

A TEENAGER has been struck down by a disease that affects only one in 40,000 worldwide.

Jarrah Jones remains in a Brisbane hospital and his loved ones concede he may never be the same again.

Doctors were "perplexed" as to why Jarrah's face began to slacken and his speech began to slur out of the blue just a few months back.

For more than a month he's been in the Queensland Children's Hospital's neurological ward after eventually being diagnosed with Wilson's disease.

The National Organisation of Rare Disorders estimates it affects one in 30,000 to 40,000 people worldwide.

It's a disease where the body has an inability to dispose of copper.

For 14 years it has built up, and is now attacking the Gympie State High School student's brain and liver.

 

Jarrah Jones and his family in happier times.
Jarrah Jones and his family in happier times. Contributed

Family friend Paula Lindholm, of Nambour, said the teen went from a "breath of fresh air" to non-responsive.

"The doctors warned that the medication might make him worse before he got better. It got worse," Ms Lindholm said.

"His mind is fully functioning but his body is sometimes completely non cooperating.

"His eyes won't open, he can't walk, he can't move.

"It's been really tough and so surreal to see someone you're close to go through that."

Hope for Jarrah does lie in the medication, and he is starting to turn the corner.

His parents, Nick and Nat, have been ever present by his side and are "doing well", all things considered.

 

Jarrah Jones and his family in happier times.
Jarrah Jones and his family in happier times. Contributed

Ms Lindholm says the best case scenario is 12 months of further treatment.

Worst case scenario is something the family don't want to think about.

"The damage could be incurable and he could end up needing a liver transplant," she said.

"We just don't know how much damage has been done; the medication can be brutal on the body."

Knowing how tough the family are doing it prompted Ms Lindholm to act.

In the eight days since she started a GoFundMe page, more than $5000 has been raised for the teen.