THE parents of a boy who could choke to death on any meal he eats are to set up a nationwide support group for other families coping with the condition.
Their son, Christopher Rennie, suffers from the rare condition which means even small bits of food can get caught in his throat without warning. Even a build-up of saliva could result in him choking to death.
Now parents Bruce and Freya want to make sure no other families go through the same torment they did as they learned how to deal with their son’s condition.
They think as many as three babies a year in the Lothians are born with tracheo-oesophageal fistula (TOF). The condition means the windpipe is split in two and surgery is required.
The first meeting of the new Scotland-wide group will take place next month at Sciennes Primary School, located just beside the Sick Kids Hospital, where the three-year-old’s mother and father have had to make numerous emergency trips over the years.
Mr Rennie, 42, said things had improved as Christopher grew older and more aware, but they have still had to make two trips to hospital from their home in Gracemount in the past six months.
He said: “We didn’t know anything about TOF when Christopher was diagnosed. It was quite difficult, and it was only through going down south to conferences that we met other people in our situation.
“There’s plenty of support like that in England but nothing up here, so I decided it was time to do something. It’s important to ease the stress and share experiences, even if it’s just things we’ve found worked in the past in certain instances. It’s non- medical support, really.”
The disease, which is incurable, is found in around one in 3500 births in Scotland.
Although it presents huge challenges to parents of youngsters with it, TOF can become more manageable with age.
Mr Rennie, who is an insurance analyst, said: “Christopher’s getting on fine now, he’s having a whale of a time at nursery and it is only really mealtimes that are an issue.
“He’s physically bigger now, meaning the hole is getting bigger, and he’s getting old enough to know what to do – to chew food a lot and swallow small amounts.”
The support group, while aimed at parents of youngsters, will also be able to help older sufferers. “In many ways they have it worse than children,” said Mr Rennie.
“They go through children’s healthcare until they’re 18, and then once they’re out into an in an adult setting they almost have to start all over again, explaining it again to everyone.”
The Evening News initially reported on Christopher’s rare condition in August 2010, telling how his parents were on constant red alert.
For more information on the first support group meeting on March 17 at Sciennes Primary, and the condition in general, visit www.tofs.org.uk.