Kind-hearted friends, teachers and strangers rally around Alfie, four, to help treat rare Loeys-Dietz Syndrome
Following his appearance in the Recorder last month, a Romford boy’s battle with a rare disease has attracted attention both nationally and closer to home.
Four-year-old Alfie Thorn, of London Road, has been diagnosed with Loeys-Dietz Syndrome – a condition so rare doctors thought he was the first person in the UK to have it.
Since we ran his story two people – including one in Birmingham – have contacted the Recorder to say they or their children have the same illness.
Like Alfie’s mother Charlotte, who now hopes to set up a UK-based information website, they’ve had to look to America to find anyone else with the condition.
Now two more kind-hearted strangers have said they want to help Alfie get to the States so his aneurysm can be treated.
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Alfie’s school, Crowlands Primary, has decided to give all donations from this month’s carol concert and school plays to the Loeys-Dietz Syndrome Foundation.
Upminster man Brian Samuels has offered to run a quiz night to raise funds.
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“I’ve got no personal involvement,” he said, “but it’s something I enjoy doing and, if the family want my services, then I’m more than willing to offer them free of charge.”
June Brooks, of Hornchurch, is also interested in donating some money to help Alfie get to America.
“His aortic aneurysm was what interested me,” she explained, “because I know someone who had that, and I know it’s very dangerous. I think more research should be done into that.”
Meanwhile, Alfie’s father, Peter Horner, wants to run the Brentwood Half-Marathon in aid of his son’s treatment, and has organised a series of fundraising evenings.
To donate to Alfie, contact the Recorder news desk on 020 8477 3903 or e-mail ramzy.alwakeel@archant.co.uk.
