By Crystal Chung @crystalkchung
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Doctors doubted Daire Flanagan would survive, but the youngster is flourishing thanks to life-saving surgery to allow more space for his brain to grow.
Daire, from Belfast, Northern Ireland, was born with Apert Syndrome, a rare genetic condition that means the plates of his skull fused too quickly while he was still in the womb.
The syndrome, which affects around 1 in 100,000, means the baby’s brain does not have the space to grow normally inside the skull, leading to an overlarge forehead, wide-spaced eyes, and sunken features.
Daire’s mum Colette said: “He was born on the Friday and when the doctors came in on the Monday they said they were surprised that he survived the weekend.”
The brave little boy underwent life-saving surgery at John Radcliffe Hospital in Oxford when he was a one-year-old to release the pressure on his growing brain, as it was being pushed out of shape and into his spinal cord.
Colette said: “When he was born his skull was fused over. He had to have his skull removed, reset and put back together like a jigsaw to allow the brain room to grow.
“He has that done a few times.
“He’s had lots of surgery throughout his life but he just gets on with it. He’s happy-go-lucky.”
Daire, who has undergone more than 20 operations, also suffers from breathing difficulties caused by his constricted skull and facial bones.
At the age of two he had an artificial airway implanted, which enabled him to breathe unassisted.
He has learned to speak with the help of Makaton, a system which helps children with a mixture of signs and symbols to support their verbal communication.
Last year, surgeons performed a intensive operation which involved breaking Daire’s facial bones and pulling the middle part of his face forward by two centimetres - to enable him to breathe naturally.
He had to cope with a special framework on his face for several months to help pull his face together.
Following the surgery, it was revealed that the operation was successful and Daire’s brain was growing normally and his breathing no longer required the artificial airway.
Mr David Johnson, clinical director and leader of Oxford Craniofacial Unit, said: “The next objective for Daire is to have his tracheostomy removed.
“We are looking at downsizing it to make sure he can breathe safely with it closed off, and then eventually remove it.
“The goal is for Daire to breathe and feed normally, so he can live a very fulfilled life and really enjoy himself.”
Daire has just been presented with a Most Inspirational Youth Award in his home city of Belfast for his bravery in dealing with all his operations.
His story appears in a new series of Body Bizarre this Thursday (October 13), 10pm, on TLC.