Published: Wednesday, 2nd July, 2008 10:30
Baby boy killed by six billion-to-one condition
By Colin Hutton
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FUNDRAISING: Leighton
A CLYDEBANK mum and dad have been left devastated after their baby boy died of a rare disorder.
Little Leighton Readie was born with a scarce strain of fanconi anaemia, leaving him battling for life.
There has only been six recorded cases of the disease in the world.
Unfortunately, after putting up a brave fight for fifteen weeks, Leighton passed away in hospital having never been allowed home.
Leighton’s grieving parents, Avril Smith and Robert Readie now want to raise funds to help research into the blood disorder.
The genetic condition — which only affects boys — is passed on through the female.
However, Avril was unaware she was carrying the gene and as she and her partner Robert already have a healthy son, Robbie, who is three-years-old, they had no reason to be concerned.
Dad Robert, 34, who works as a painter and decorator, said: “Robbie is a healthy little boy so there was no issue about us not having a healthy baby.”
Leighton was delivered by Caesarean and the nurses immediately had major concerns as it was apparent that Leighton’s forearms had not developed fully.
Avril, 27, who is a primary school teacher, told the Post: “The most obvious thing that they noticed was that he had no forearms, but they couldn’t diagnose straight away what was wrong.
“He had no forearm bones, no thumbs, one kidney was on top of the other and he had heart problems.
“I was in intensive care for a day but Robert got to go down and see Leighton and brought some pictures up.
“Seeing your little boy like that is absolutely devastating.”
It took almost a month for Leighton’s condition to be diagnosed by experts in London.
There are 13 different types of fanconi anaemia — from A to M — and Leighton had Type B, which is the rarest.
In a bid to raise as much awareness about the condition, as well as raising as much cash as possible to fund further research, a group of friends has now organised two charity nights in Leighton’s honour.
All the money raised on the nights — with the latest being held in the Dalmuir 543 on July 18 — will be split between Yorkhill Children’s Hospital, where Leighton was cared for, and the UK Fanconi Anaemia Clinical Network.
Anyone who wants to donate to the cause should contact Robert Dalgleish at rad@fanconi.org.uk.
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