‘Life-changing’ surgery gives Bath boy ‘first ever sleepover’

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Beth Cruse,West of England And

James Diamond,West of England, Bath

BBC A boy with a genetic disorder wears small black-rimmed glasses, a white polo shirt and a black fleece. He smiles at the camera while sitting on his mother's lap who is wearing a pink jacket. She has gray hair and also smiles. They are both sitting in a living room on a beige sofa covered with a light brown fluffy blanket.BBC

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

The mother of a seven-year-old boy with a rare genetic disorder says life-changing surgery will finally allow him to have his first ever sleepover.

William, from Bath in Somerset, suffers from Treacher Collins syndrome, a condition which affects the growth of a child’s skull and facial bones.

In May, he underwent an eight-hour surgery in which doctors reconstructed his jaw using rib bone grafts, allowing him to breathe, eat and swallow independently.

“Now he’s celebrating his eighth birthday and his world is opening up,” William’s mother Kate said.

Kate told BBC Radio Bristol that William suffered from a “severe” case of Treacher Collins syndrome, which disrupted the development of his bones and caused his airways to become blocked.

“From birth he had difficulty breathing and had a tracheotomy at two weeks old,” she said.

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

“It’s taken very seriously, he had to be with someone at all times who knew what to do in an emergency,” Kate added.

A boy with light brown hair and black-rimmed glasses leans back against his beige sofa. He has a genetic disease and has a white bandage on his neck. He wears a white polo shirt and a black fleece. He folds his hands and smiles at the camera. Behind him is a gray and white penguin stuffed animal.

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

Surgeons at Bristol Children’s Hospital were able to reverse the procedure, removing William’s breathing tube and taking a small part of his rib bone to create new jaw joints.

“A frame was placed in his lower jaw and we turned these screws to try to artificially pull him forward,” Kate explained.

Thanks to the operation, William no longer needs to be constantly monitored by an adult who knows what to do if he stops breathing.

“He’s desperate to go down the water slides and he’s lined up his little friends to have sleepovers and go play,” she said.

“At his first sleepover I think I won’t sleep the whole night, it will be huge but for all the right reasons.”

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