The story of Alfie
When Alfie was younger he was suspected as having ADHD and ASD, from ages 5-8 he attended speech and language resources and worked with CAMHS. He began to regress in Sept 2021 and a CT scan was ordered in December at the local hospital, it showed abnormalities in Alfies brain. We went to Alder Hey and following a physical, MRI and many blood tests Adrenoleukodystrophy was diagnosed. The next day our other two children William (11) and Noah (3) were given blood test and were found to also carry the faulty gene in their x chromosome. All 3 boys also have adrenal insufficiency and are steroid Dependent for life. Alfies prognosis was 2-4 years and within 2 months he had lost his mobility, quickly followed by his ability to eat and drink and talk. Now aged 10 Alfie is fully dependent and non verbal but communicates with eye movements for yes and no questions. William and Noah are scanned regularly for cerebral changes but as of yet are A symptomatic. Noah attends the same speech and language resource that Alfie went to and is being treated for ADHD. We’ve found out that I am the carrier of the faulty gene, as is my mum and my brother also has it, he has to be monitored closely also. Adrenoleukodystrophy affects about 1 in 17,000 boys and if not caught early enough is life limiting. We have a great support network through Alex The Leukodystrophy Charity who strive to raise awareness and advocate for newborn screening in the UK. We now make as many memories as we can and cherish everyday with our amazing boys.