Article: published on 5 January 2024

A teenager awarded a British Empire Medal for his fundraising efforts has been chosen to have life-changing surgery not available on the NHS.

Louis Johnson, 17, has raised more than £75,000 for different charities while struggling with his own health condition.

He has pectus excavatum, otherwise known as sunken chest syndrome, a rare medical condition that is crushing his heart and lungs, leaving him struggling to breathe.

Surgery was taken off the NHS in 2019 but days after receiving his honour he has learned a surgeon in Middlesbrough is to take on his case.

Louis, who was invited to Downing Street where he was told he was being honoured, has now been selected for a multidisciplinary team study, which could influence whether the procedure is returned to the NHS.

"We knew about the trial last year, we've just been waiting for the NHS to say yes to a surgeon," his mother Teresa said.

Louis will undergo the Nuss procedure in May, which will involve two metal bars being screwed to his rib cage for two to three years, after which time they will be removed.

Sunken chest syndrome is a malformation of the chest wall caused by the breastbone sinking inwards.

However, corrective surgery was taken off the NHS in England four years ago as the procedure was described as cosmetic.

The NHS also said there was insufficient evidence the benefits of surgical treatment warrant funding.

Despite significantly impacting Louis's life, the teenager had been told by consultants that "you've got to get on with it and live your life", his mother claims.

The procedure remained available on the NHS in Scotland, Wales, and Northern Ireland.

The operation helps to flatten the chest by pushing the breastbone forwards.

Ms Johnson hopes that this will make life easier for Louis, who was in hospital every week from April to September last year.

"He can't do normal things without being breathless or tired," she said.

"He's missed so much of his teenage life being poorly."

The 17-year-old used to love kickboxing, but hasn't been able to practice the sport in four years, and the Wolves fan struggles to go to football matches due to crowds and being unable to sit comfortably.

"It's been a hard time health-wise," Louis said.

"One of the worst years I have had, but I finally get my operation this year.

"It all seems so unreal but it’s definitely finally all happening."

The teenager is undertaking a Uniformed Public Services course and has dreams of being a firearms officer with the police.

And the veteran fundraiser will continue to fundraise for worthy causes, including Birmingham Children's Hospital.

A spokesperson for the hospital said: "His fundraising total for us stands at an incredible £23,600 and we can't begin to express our gratitude.

"Louis's appetite for fundraising, alongside his love for our hospital, is second to none.

"We are in awe of his passion and commitment, and thrilled he's now been honoured with a BEM."

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