Eastbourne mum calls for screening at birth as her son’s condition deteriorates

An Eastbourne mum whose 11-year-old son has a debilitating and life-shortening condition has started a campaign to have all children screened at birth.

Tuesday, 18th May 2021, 1:24 pm

Rosie Aldridge’s son Alfie led a normal, healthy life until the age of eight. But now, at 11, he has developed ALD and sadly may not make it to adulthood. ALD is a build up on fatty acids in the brain. It destroys nerve cells which relay information, then shuts down the brain, the nervous system, as well as the organ and limb functions.

However, if Alfie had a simple heal prick test at just five days old, which is a standard procedure in the Netherlands and many states in the USA, a bone barrow transplant would have prevented this and Alfie would now be leading a full and healthy life.

Actress Britt Ekland is backing Rosie’s campaign because her grandson was born in the USA and was tested and diagnosed with ALD. Newborn screening is a life saver because if a child later shows signs of developing the disease then the early diagnosis means they can be cured with a bone marrow operation. But if a child only gets a diagnosis after the condition has taken hold then it is frequently too late to do anything.

Rosie said: “Watching Alfie deteriorate from a fun loving healthy young boy, enjoying school, playing football, riding his bike, playing his Xbox - all the normal things an eight-year-old would enjoy doing - is heartbreaking. He had a dream of becoming a racing driver but now Alfie has lost the use of his legs and he is unable to talk, chew or swallow. He’s peg fed and his hearing and eyesight are deteriorating. It is just about every mother’s nightmare. You feel so helpless and many nights I just lie there holding him, holding back the tears.”

A petition, set up by the Adrenoleucodystrophy charity already has more than 11,000 signatures to try and change the law. Rosie is appealing to everyone to sign the online petition at here.

Community fundraisers Don and Abby McPhee, who are good friends of the family, have seen Alfie deteriorate rapidly after the last couple of years.

Don McPhee said Alfie’s deterioration was one of the most ‘heartbreaking’ things he had seen and he said: “Rosie’s love and dedication to Alfie is clear for everyone to see. Alfie has sadly been in and out of hospital many times in the past 12 months, and whilst in hospital Rosie never leaves his side.”