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Life-changing surgery means boy gets first sleepover

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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.

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. »

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