Transformed: Dad hardly recognised son

IRA BERRYMAN is barely recognisable as the boy who once struggled to breathe under the pressure of his deformed head.

Last week, the 6-year-old Wellington boy was able to remove a purple ‘‘halo’’ that had been screwed into his skull three months ago, and used to slowly crank the bones in his face forward.

Back then, Ira’s forehead bulged over his scrunched face, as a result of a condition known as Apert syndrome, which also fused together his fingers and toes.

He has had at least 16 operations to help him survive, which have included widening his nasal cavities, having his skull cut open to relieve pressure on his brain, springs loaded into the back of his head, and his fingers surgically separated.

The latest operation, in November, was to correct the deformation in the middle of his face, which made it difficult to breathe or sleep, and cut off oxygen to the brain.

Wellington surgeon Charles Davis peeled back Ira’s facial skin, cutting away the middle bones of his face, and fitted his head with a metal frame, or halo, screwed into the top of his skull.

Since then, every day, twice a day, parents Benj and Maria had taken out a small purpose-built screwdriver and moved Ira’s frame 0.5mm forward, widening the gap between the bottom and top of his face.

Three months on, his father says he barely recognised his son. ‘‘Physically, the way he looks, he is almost like a different kid.’’

His mother said Ira also seemed to be sleeping better. Before the last operation, his sleep apnoea roused him roughly once every five minutes, leaving him exhausted and affecting his schooling.

‘‘We’ve already noticed the difference. He is sleeping through the night now.’’

Yesterday, Ira said the thing he was looking forward to most was go-karting and being able to wear earmuffs. ‘‘He loves mowing the lawn,’’ his father explained.

While the surgery has helped, it is not likely to be the last for Ira. He will probably have to have the same operation in his late teens, as well as further work on his hands to help him grip.

‘‘But we think it’s time to give him a break, some time to recover,’’ Maria said.

Photo: MAARTEN HOLL/FAIRFAX NZ Winning smile: Ira Berryman with sister Edith and parents Benj and Maria. Ira has Apert syndrome and has undergone more than a dozen operations.

During: For three months Ira had to wear a halo, which his parents used to slowly wind the middle of his face forward.

After: Ira’s face has moved more than two centimetres in three months, leaving him looking much like any other 6-year-old boy.

Before: Apert syndrome left Ira Berryman with an enlarged forehead.