Brighton boy’s Christmas wish comes true with breathing tube removed

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.

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

He and his family hope flew out to America earlier this month and Loui had an operation to have his surgical tube which helps him breathe, called a tracheostomy, removed.

From left: Dad Luke Heath, Loui Legend and Karly Herriott after he had his tracheostomy removed (Image: GoFundMe)

For the first time, Loui is now able to breathe without it. He also had his halo, a piece of equipment which goes over the head to help reposition the jaw and skull, removed. 

Writing on their GoFundMe page, his mum Karly Herriot and dad Luke Heath said: “We are on cloud nine. Loui is really, really happy.

“Losing his halo as well as the tracheostomy was a double whammy and it shows how much it was weighing him down by how much his spark has come back instantly.

“He’s just skipping, humming and being silly and happy now. And that’s with the aftermath of the brutal skull surgery he had earlier this month.”

Loui prior to the surgeries (Image: GoFundMe)

The family arrived in America on December 5 and Loui had a series of operations and procedures before he was finally free of his tracheostomy on December 14.

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

He had his second major surgery in July this year which was vital in helping him get his tracheostomy removed.

Loui and his family (Image: Family handout)

His parents had to relaunch their fundraiser in October as they 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 tracheostomy out.

This included two overnight stays for sleep studies that needed to be scheduled after the final surgery and were not included in the original price.

But with the help of the Patcham community, particularly Gayle and Paul Newman who run The Ladies Mile Pub, the family were able to reach their fundraising target and cover the extra $22,470 they needed.

Karly added: “We can’t thank the fundraisers enough. You have helped to change all our lives.”