Life-changing surgery means boy gets first sleepover

A boy with a genetic condition is wearing small black-framed glasses, a white polo-shirt and a black fleece. He is smiling at the camera while sitting on the lap of his mum who is wearing a pink jacket. She has grey hair and is also smiling. They are both sitting in a lounge on a beige sofa which has a light-brown fluffy blanket.
Image caption,

William has Treacher Collins syndrome, which affects around one in 50,000 children

  • Published

The mum of a seven-year-old boy with a rare genetic condition says life-changing surgery means he is finally able to have his very first sleepover.

William, from Bath in Somerset, has Treacher Collins syndrome which is a condition that affects the growth of a child's skull and facial bones.

In May, he underwent an eight-hour surgery where doctors rebuilt his jaw using bone grafts from his ribs - allowing him to breathe, eat and swallow independently.

"Now he's looking at his eighth birthday with his world opening up," said William's mum Kate.

Kate told BBC Radio Bristol that William has a "severe" case of Treacher Collins syndrome, which disrupted the development of his bones and caused his airways to be blocked.

"From birth he struggled to breathe and was given a tracheostomy at two-weeks-old," she said.

A tracheostomy is a procedure where a hole is made at the front of the neck and a tube is inserted through the opening.

"It is taken very seriously, he had to be with someone at all times who knew what to do in the event of an emergency," Kate added.

A boy with light-brown hair and black-rimmed glasses is leaning back on his beige sofa. He has a genetic condition and has a white plaster on his neck. He is wearing a white polo top and black fleece. He is clasping his hands together and smiling at the camera. Behind him is a grey and white toy penguin teddy.
Image caption,

William says he is excited to go swimming and have a sleepover with his friends

Surgeons at Bristol Children's Hospital have successfully reversed the procedure, removing William's breathing tube and taking a small part of bone from his ribs to create new jaw joints.

"A frame was put into his lower jaw and we were turning these screws to try and artificially pull it forwards," Kate said.

The surgery means William no longer needs to be constantly supervised by an adult who knows what to do if he stops breathing.

"He's desperate to go down water slides and he's lined up his little besties to have sleepovers and to go on play dates," she said.

"On his first sleepover I think I won't sleep a wink that whole night, it will be enormous but for all the right reasons."

Media caption,

Hear William's mum and surgeon speak to BBC Radio Bristol.

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