Brighton boy's wish to have breathing pipe removed for Christmas

Loui Legend, from Patcham, Brighton, was born in February 2015 with Treacher-Collins Syndrome, a cruel condition which affects the development of the bones and other tissues of the face.

Being undetected during pregnancy, Loui’s condition was a massive shock to his mum and dad Karly and Luke.

“It was a magical moment when Loui cried out after being born, but it was soon snatched away from us when we realised something was wrong,” they said.

Loui with his family (Image: Family handout)

Loui's case is very severe and because of the small size of his chin he has had to have a tracheostomy to breathe.

The eight-year-old has not been able to do some of the simple things that other children may take for granted like playing in the sand or going swimming.

Karly said: “Loui always amazes us all with his strength, determination, and great sense of humour. He’s always trying to make everyone laugh and is adored by everyone that meets him especially his younger brother and sister.”

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Loui has had to travel to America for several major surgeries, his first back in August last year.

That was the beginning of an 18-month process and he had his second major surgery in July this year which can help him have his tracheostomy, the tube which helps him breathe, removed for good.

His parents thought they had enough funds in the account to be able to book the final surgery but were hit with another hurdle of the decannulation process to get his tracheotomy out.

This includes two overnight stays for sleep studies that need to be scheduled after the final surgery was not included in the original price.

The surgery will cost them another $22,470 which is £18,000 and they need this money within a month so that they can book the surgery before Christmas and hopefully give their Loui his one wish.

Loui’s dad Luke said: “Most of you know Karly and what a kind, gentle and loving woman she is.

“But I see this woman behind the scenes every day fighting as hard as she possibly can for our Loui.

“It’s a constant battle to get what we want for him.”

Gayle and Paul Newman at The Ladies Mile Pub have helped with the couple’s fundraising effort and already helped raise £17,500 for Loui in previous years.

Paul and Gayle Newman from The Ladies Mile Pub have supported the family's campaign with fundraising (Image: Paul Newman)

Now, Gayle is running a charity raffle to help get the extra money so Loui can have his vital surgery.

Prizes have been donated for a raffle and she has arranged a charity box that people can donate to as an alternative to sending Christmas cards.

In the first few days the team had already raised £15,000 but need more money for the final push.

Luke and Karly said: “We feel so lucky to be part of such an amazing community who have rallied together and have already helped so much over the eight-and-a-half years we’ve been fundraising.

“We could never put into words how truly grateful we are to Gayle, the locals and the supporters further afield.”

The raffle takes place at The Ladies Mile Pub, Patcham on Sunday, November 19, at 3pm.