Jackson Seminara was a playful toddler.
Jackson Seminara was a playful toddler.

'Sometimes my body is so sore I feel like I can’t breathe'

A simple twisted ankle two years ago led to a life-changing diagnosis for Tweed boy Jackson Seminara.

Every night the family is in agony with the ten-year-old as he cries with pain.

"He screams uncontrollably with agonising pain, and we can't even cuddle him, because it hurts him more," his mother, Bianca, said.

What causes Jackson's chronic juvenile arthritis, or why its symptoms are worse at night, remains a mystery.

Jackson Seminara with mum and dad, Bianca and Jerome in Tweed Heads. Photo: Blainey Woodham / Tweed Daily News
Jackson Seminara with mum and dad, Bianca and Jerome in Tweed Heads. Photo: Blainey Woodham / Tweed Daily News Blainey Woodham

But before diagnosis the former Banora Point Primary pupil was a normal, active kid.

"He was our Action Jackson - a sporty kid - right into soccer and footy," Mrs Seminara said.

The boy was eight when he twisted his ankle at the banks of a river while on a family fishing trip.

The injury triggered a "super immune system" response which wrongly attacks joints and soft tissues.

Jackson has leaking synovial fluid, dislocations and arthritic pain.

Doctors fear he could turn blind from inflammation. And a burning rash washes over his body.

It's a side effect from aggressive, experimental chemotherapy for what doctors consider an incurable disease.

"Sometimes my body is so sore I feel like I can't breathe," Jackson said.

"I try my hardest to be positive and hope that one day I will wake up pain-free and able to move freely, just like I did when I was eight."

It's been a traumatic time for the family, suddenly thrust into the complicated world of disability pensions and medico specialists.

Jackson's condition is as rare as leukaemia and requires around-the-clock care.

To cope, older siblings Joe, 14, and Ruby, 13, have stopped playing sport "out of respect".

Mr Seminara is a full-time carer for his son, while Mrs Seminara will be home-schooling Jackson.

"It's heartbreaking, he's lost so much of his life and dignity," Mrs Seminara said.

"But we're trying to stay as positive as possible."

The family was hesitant to ask for community help, but realised they need it.

"Jackson is a delightful young boy whose juvenile arthritis has deteriorated significantly," his occupational therapist Angela Brown wrote.

"This family appears to be at breaking point.

"Their living situation is not tenable, even in the short term."

Jackson urgently needs a hospital bed and wheelchair-friendly home.

If you can help in any way, email jbsemgang@gmail.com.

HELP JACKSON:

The occupational therapist has labelled Jackson's home "completely unsuitable" and says these needs are urgent:

- Transfer belt

- Hospital bed

- Hand-held shower

- Wheelchair-friendly home

- Hydrotherapy pool


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