Tragic Blackburn boy’s mum urges others to 'demand tests' (From Lancashire Telegraph)
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Tragic Blackburn boy’s mum urges others to 'demand tests'
12:04pm Thursday 9th February 2012 in News
DIAGNOSED McCauley with his mum and dad
THE mother of a terminally ill six-year-old has urged parents to demand tests if they suspect their child is ill.
Catherine Riley, 42, of Bolton Road, Blackburn, said she took son McCauley to hospital several times after he tripped over or walked into things, before he was diagnosed with the genetic brain condition Adrenoleukodystrophy (ALD).
She said: “He was walking into things and losing co-ordination. The teachers at school noticed he wasn’t doing as well at reading and writing and they told us he should get a scan.
“We had to persist and persist for that and for a blood test before we finally got it done.
“I’d say that other parents shouldn’t take no for an answer if they think their child is ill, and to be aware of the symptoms of ALD, which isn’t well known about.”
ALD is an inherited recessive genetic disorder linked to the X chromosome. The disorder leaves the body unable to break down fat molecules, which build up and damage nerve cells in the brain and spinal cord.
There are several forms that ALD can take.
The most devastating type is the childhood cerebral form which McCauley has, meaning that nerves in the brain are destroyed.
About 35 to 40 per cent of all cases of ALD are this type, which usually appears between four and eight years of age in boys.
About one in 30,000 children in the UK are affected every year.
When symptoms break out they will usually become totally disabled in six months to two years, and die some time after.
