Aron's Fight Against ALD

Aron's story – Townsville family battle to raise awareness over Lorenzo's Oil disease

JENNIFER O'REILLY

December 2nd, 2008

IT'S been an emotional rollercoaster for Townsville's Groves family since their son Aron was diagnosed with a rare genetic disorder in July.

The seven-year-old is bravely battling adrenoleukodystrophy, a disorder at the heart of the true Hollywood movie Lorenzo's Oil.

Suean Groves said the family was keen to raise awareness of the disorder.

"Aron's still running around now but he has deteriorated in the past 11 months," she said.

"His speech has slurred and he doesn't understand long sentences any more.

"His peripheral vision is also gone, he runs into everything now and hurts himself a lot."

Adrenoleukodystrophy is a serious genetic disorder that progressively affects the adrenal gland, along with the white matter of the nervous system.

An abnormal accumulation of very long chain fatty acids causes tissue damage, however the exact nature of this relationship is not understood.

Mrs Groves said they first noticed problems with Aron's hearing, before he was diagnosed in July.

"He seemed to be going deaf, his speech was slurring," she said.

"He was having problems at school. He's only in Year 2 but it was noticeable."

The difficulties at school had come as a shock for Aron's parents after the little boy flew through Year 1.

Hearing tests showed Aron was moderately deaf but the family's concerns grew when they noticed their little boy's fine motor skills were also deteriorating.

"He used to be able to catch a ball," Mrs Groves said.

The family said they were raising awareness and also reaching out for help from the Townsville community.

"(Adrenoleukodystrophy) is very, very rare but it does exist," Mrs Groves said.

"Without prior knowledge of it being in your family, you don't know about it."

It is going to be very expensive to keep Aron comfortable over the next year or two with expenses for things like wheelchairs, hoists, modifications to the house, a car suitable to transport the little boy, a hospital bed for home care and nursing care.

But Mrs Groves said the family, including father Daniel and sister Melanie, would continue to fight on despite the diagnosis of under two years of quality life left for Aron.

"We're looking at other (treatment) options overseas," she said.

"Australia doesn't take it on, we don't have the money for the research into it.

"We don't know medically, we've been told he's too far gone. But we want to exhaust every option."

A Christmas charity ball to raise money for Aron's care is being held by the Liberal National Party, and will be hosted by Townsville LNP candidate Murray Hurst.

The ball will be held at the Southbank Convention Centre in Palmer St on December 5 with tickets $150 a head. For more information or tickets contact 0418 290 385.

To help Aron contact the family through www.aronsfight.synthasite.com