Actress Britt Ekland is calling for the introduction of a standard birth test in the UK which could prevent children dying from a rare disease.
ALD (Adrenoleukodystrophy) is a rare, genetic condition which causes the build- up of very long chain fatty acids, VLCFAs, in the brain.
It can destroy the brain, the nervous system and organ and limb functions. Routine tests on babies are carried out in many developed countries – but not the UK.
One in every 21,000 boys is born with ALD. Although girls who carry the ALD gene mutation don’t develop the full condition, about half may have some symptoms.
Mum-of-three Ekland, 78, is a patron of British ALD charity, Alex TLC, and her grandson Lucas, four, has the condition.
She said: “It is a tragedy why the UK allows this distress to continue.
“Lucas and his family have been saved from devastation by a simple blood test at birth and because of that, his cousins in the UK have now been tested.
“Had his father Nicholai, my son, who was born in Britain, been a UK resident, Lucas would not have been so lucky.”
An undiagnosed male British child could, at worst, face an early death.
Undiagnosed females may be carriers of ALD and most only learn this when their son falls ill or dies. Yet, diagnosed before symptoms show, the condition can successfully be treated.
A petition on the Parliament website calls on the Government to fund testing for ALD at birth. Campaigners believe it would lead to longer lives of quality and save the health budget millions.
The UK has a poor rating in the developed world over checking babies for diseases they may or will develop.
A maximum of nine conditions are screened from a pinprick blood test but 23 other countries rank higher, with 16 testing for at least 20 conditions.
An ALD test saved Lucas and California had added ALD to birth screens three months before birth. Lucas’s diagnosis led directly to ALD tests for his British cousins, Huxley Aket and Oliver Goodwin.
Ekland added: “The UK is a world leader in genomics and analysis. If anyone can save its babies, the UK can. But its baby screening process appears rooted in the 20th century. It is letting children needlessly suffer and die.”
To sign the petition, click here.
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