Brave schoolboy's rare genetic condition causes his bones to fuse together

30 September 2023 , 20:21

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Lewis Connett in this year's Matalan Alder Hey pyjamas (Image: LiverpoolEcho WS)

A young lad who was born with a rare genetic condition that causes his bones to fuse together has already had more than a dozen operations and will continue to have surgery into adulthood.

Lewis Connett has , a rare genetic condition that affects one in 65,000 newborns. It can cause premature closure of the bones in the skull as well as fusion of the fingers and toes.

His mum Donna, from Yorkshire, says the brave boy was transferred to Alder Hey Hospital in Liverpool when he was just a few weeks old, and has been under their care ever since. Now aged 10, Lewis has already undergone around 18 major surgeries, the first being when he was five months old.

Lewis goes to school and loves to play football (Donna Connett)

Lewis Connett as a baby (Donna Connett)

"Alder Hey is a wonderful place. They are all so caring and so kind. He's had a lot of surgeries and will have lots more to come, but everyone always puts us at ease," she said. Alder Hey is one of only four hospitals in England and Wales that has the ability and experience to treat Lewis' genetic condition.

Because of this, Donna said Lewis is not defined by his condition and is in a mainstream school and loves to play cricket and football. Wanting to give back to the hospital that has taken such good care of them, the family have raised over £60,000 for the hospital.

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"They've always been there for us, offering a listening ear. From the person in the café to the person who carries out the operations, they are incredible," Donna told the LiverpoolECHO. This week also marks the launch of the 2023 Matalan Alder Hey Pyjamas. For the past ten years, the retailer has released a pyjama collection to raise money for Liverpool’s Alder Hey Children’s Charity.

A hugely popular campaign, many shoppers buy multiple pairs for the whole family to wear. To mark 10 years of tradition, the Connett family were invited to take part in a special VIP event ahead of the 2023 pyjama release.

This year's design has focused on incorporating all designs over the last 10 years and brought families back to model them. "Every year, the pyjamas are fantastic and it was amazing to be invited back. Lewis modelled the pyjama campaign when he was just a baby so won't remember but this time it was wonderful to see," she said.

"It's a campaign that keeps Alder Hey in the limelight, now more than anything charities need more help than ever so it's a great way of supporting that as well as involving all the family."

Aaliyah Rugg