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Brave Daire Flanagan just keeps on smiling despite the rare disorder that's left him needing many operations

By Lesley Houston

Published 10/09/2015

Little Daire Flanagan with his mum Colette
Little Daire Flanagan with his mum Colette
Belfast boy Daire Flanagan with his built frame

In the five short years of his life little Daire Flanagan has endured well over 20 operations, many more than most of us will undergo in a lifetime.

But he carries the burden with a brave little smile, for life with the rare condition Apert syndrome is all he's ever known.

His mum Colette calls him her "modern day superman", for like a superhero her little boy faces extraordinary battles with superhuman bravery.

Apert syndrome caused Daire's skull bones to fuse too quickly in the womb, preventing the development of an airway and leaving his brain restricted by his cranial bones. In order to survive the Belfast youngster must regularly allow surgeons to break his tiny skull and put the bones back together "like a jigsaw puzzle" to allow for growth.

Colette recalled the first time doctors told her of the treatment he required, which can only be carried out in England.

"I remember looking at the surgeon's big hands wondering how he was going to work on Daire's tiny wee skull," she said.

Though he's gone through countless operations - Colette and her husband Barrie lost count when the figure exceeded 20 - their son's latest procedure was to help create an airway, to eventually hopefully remove the tracheostomy he depends on to breathe.

His mid-facial advancement frame was applied a couple of months ago, a necessary stage in a series of procedures which will soon be tested to ascertain whether it's been successful.

Though it was to have stayed on for three to four months, it succumbed, unsurprisingly for a child of his age, to rough and tumble and had to come off after two months when it was damaged in a few falls.

"It was horrible, I hate to say it because he's my son, but it hurt him and though he didn't let on I knew it was sore when I had to wash it and brush his teeth," Colette said.

But still he took it with no complaint, like all his medical treatment.

"He was grand, he takes everything in his stride, he's happy-go-lucky," she said.

Daire has limited verbal communication using Makaton, a sign language made famous by BBC children's character Mr Tumble, and is somewhat developmentally delayed, but his difficulties pose no obstacle to his enjoyment of P2 at Fleming Fulton School.

"He cries when he can't get to school," she said.

When he does attend, Colette is able to work at her Civil Service job and is grateful for her work's flexibility, as well as the support of her close-knit family of sisters, a brother and parents.

At home he has a little sister to play with, and though two years his junior, Clodagh helps him any way she can, "kind of mothering him", Colette added.

Like any child of the digital age he loves his tablet, but also his jigsaw puzzles and building blocks.

Colette is happy to try to raise awareness of her son's condition and was even content to answer people's questions about his facial frame.

"I'd rather people ask, if they're genuine, than point and laugh and stare. Some people will stop and say 'what's his wee syndrome?', and I don't mind that."

As for Daire's reaction, Colette said: "I think he liked the attention he was getting wearing it."

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