Kidney transplant: Hounslow sports coach is 'lucky to be here'

"When I entered the world, my parents were informed that I might not survive [...] yet, as you can see, I’m here now."

Johnny Byamungu, who hails from Hounslow in west London, was born with a unique kidney issue known as Prune Belly Syndrome. After battling health challenges for many years, he reached a point at the age of 16 where a kidney transplant became necessary.

At just 20 years old, the sports coach—something he never imagined he would end up doing—expressed to BBC London during a training session for first-year students at Marshgate Primary School in Richmond that he feels "fortunate to be here today."

Through the “pairing” system implemented by the UK Living Kidney Sharing Scheme, his mother donated her kidney to a different family, while Johnny received a kidney from another donor.

"It was the greatest opportunity I could have hoped for, especially as I looked towards my future. Nobody wants to find themselves in that situation—relying on dialysis and making hospital visits three times a week. It's far from ideal for anyone," he explains.

"I wouldn't be able to teach in the same way I do now, or even at all. Receiving that call was truly a blessing; it was incredible."

Prune Belly Syndrome, also called Eagle-Barrett syndrome, is an uncommon disorder that exclusively impacts boys, as noted by Contact, a charity focused on disabilities.

For individuals with this serious condition, it can lead to underdeveloped abdominal muscles and issues with the urinary tract, along with various other symptoms.

Following his kidney transplant, Johnny was finally able to return to playing football. He was chosen to represent England in this year's Transplant World Cup, where the team finished in third place.

"It's incredible to be back playing the sport I'm passionate about," he shares.

"I believe it's a dream for many people to represent their nation, and being able to do it was truly incredible—a wonderful chance."

His medical team, headed by Dr. Emma Salisbury who manages the Young Adult Kidney Clinic at Hammersmith Hospital, closely monitored his advancement in the tournament.

She expresses: "Johnny is a remarkable person, and I credit his parents and his own character for that. To me, he embodies everything I hope for all of our young adult patients."

"Life hasn't been easy for him, and I understand that he's faced some really tough times. It's only natural to feel a bit sorry for oneself in those moments. However, Johnny has managed to get back on his feet and seize every chance that has come his way."

“She emphasizes that he has always refused to let his kidney issues limit him.”

Dr. Salisbury's clinic currently sees around 100 patients, aged between 16 and 24, at any moment. The clinic focuses on supporting young kidney patients during their transition from pediatric to adult healthcare services.

"It would be a lot simpler for me to keep them completely protected, insist that they visit the clinic, and avoid any kind of risky behavior," she explains.

"But that's not what I hope for them. Pitying them doesn't make a difference; giving them strength and support does."

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