Boy whose head grew to DOUBLE its normal size has surgery to stop his brain being pushed out of shape

A BRAVE six-year-old boy whose head grew to double its normal size is now enjoying a new lease of life thanks to surgery to create more space for his brain to grow.

Daire Flanagan, from Belfast, Northern Ireland, was born with Apert Syndrome - a rare genetic condition which means the plates of his skull fused too quickly in the womb.

The syndrome, which affects around one in 100,000, meant his brain didn't have the space to grow normally inside the skull, leading to an oversized 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 courageous little boy underwent life-saving surgery at John Radcliffe Hospital in Oxford when he was just a 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 had 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 communication made up of a mixture of signs and symbols to support children's spoken language skills.

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.

For several months afterwards, he had to cope with a special frame on his face designed to help pull it together.

Following the surgery, it was revealed that the operation was successful and Daire’s brain was growing normally - while he no longer required the artificial airway to breathe.

And now, Daire has been presented with a Most Inspirational Youth Award in his home city of Belfast for his bravery in dealing with all his operations.

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's story appears in a new series of Body Bizarre this Thursday (October 13), 10pm, on TLC.