Test our boys
My fight to spare other lads from my Alex’s fate
When my son Alex was 7, his teacher called me into class. ‘He won’t listen and his work has gone downhill,’ she said.
He’d always been top of the class. Our GP put it down to attention-seeking. It was understandable. I’d had my second son Ayden only a few months earlier.
Then the teacher called me back again.
‘He’s squinting at the board and sometimes forgets where the toilets are,’ she said.
My mother’s instinct told me something was very wrong. Alex had tests and, in January 2001, I found out he had adrenoleukodystrophy, known as ALD.
It’s a fatal, rare brain condition caused by fatty acid build-up and typically affects boys.
‘Alex will die within the next couple of years,’ said the doctor. Devastated, I started researching the condition. If detected early enough, children could live a normal life after chemotherapy and a bone-marrow transplant. But, for Alex, it wasn’t an option, he’d been diagnosed too late. I was told he’d lose the ability to walk, talk and eat. By April, he needed a wheelchair.
Two months later, he could no longer swallow, had to be tube fed.
Me and Ayden were tested, too. Ayden also had ALD, but they could monitor him with MRI scans every six months.
I was told I was a carrier of the condition. I felt such guilt, knowing I’d passed it on to my boys. Alex needed endless care, so I left my admin job to look after him.
I set up a charity called Alex TLC to provide a support network for families like ours. ‘TLC’ also stands for The Leukodystrophy Charity.
I wanted Alex’s life to be as normal as possible, so we still had holidays, even went to Disneyland.
Then, in 2008, an MRI showed deterioration in Ayden’s brain. Within a fortnight, he was in hospital for treatment, and in isolation for 16 weeks after.
He missed a year of school, but then was as right as rain.
Alex defied the odds and lived to 19. He died during the night in 2012, after catching a virus his body couldn’t cope with.
I was heartbroken, but the worst part was knowing that he didn’t have to die. If he’d been tested as a baby, he could’ve had treatment like his brother.
Ayden’s now a healthy 21-yearold, has been to uni. It’s so unfair my boys had such different outcomes.
With the help of my right-hand woman Karen Harrison, Alex TLC is campaigning for automatic screening for ALD in newborn boys.
It’s now under review with the National Screening Committee.
I believe no other family should need to see their son deteriorate the way I did.
Not when a simple test could save their lives.
If detected early, children could lead a normal life