The story of RAYAAN
Rayaan started having periodic seizures at around 3 months old which always needed hospital admissions, at 10 months old he was diagnosed with possible leukodystrophy (Vanishing white matter. VWM). My parents were told he was given less than 5 years, in which he would lose All of his abilities, sight, hearing, physical abilities, he won’t be able to walk, talk, stand or eat etc. At age 2 he was given a NG tube, peg, and eventually a mickey button. A pattern or 1 weeks at home 2-3 weeks in hospital consistently till around 7-8 years old, he picks up infections in a flash, he’s survived meningitis, and TB Meningitis. When he was 10 years old. It was here his veins kept popping every hour, that lead to him having nerve damage in his arm, so him and his sister set up a go fund me page to raise funds for an acuvein tool, which easily scans your arms for veins and indicates which is the strongest vein. They raised over £7000+ in around s week for 2 devices for his local children wards. For all children who have difficulty with cannulation. Rayaan’s dad then fell ill and passed away so we paused any fundraising efforts. It’s not till he was 14 where a gene test was done that he we then got a confirmed diagnosis of FADD Syndrome. Which is so rare that there has only ever been 5 cases worldwide, and all previous children died whereby he is the only living case. There’s not much to go by online apart from medical research papers. But the prognosis is still terrminal. Having said that, he is a soldier, keeps fighting and is and will always be our superhero.