Luton teenager beats rare genetic disease to join national gymnast team

“We all lived at Great Ormond Street Hospital for months. The staff become your family – they were absolutely incredible”
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Fifteen-year-old Riley Robertson-Browne was born with a rare genetic immuno-deficiency disease but he’s overcome it to earn a place on the regional gymnastics squad.

The Cardinal Newman pupil was diagnosed with SCID (severe combined immuno-deficiency) while still in the womb. The condition causes children to be born without a working immune system and Riley received a ground-breaking cord blood transplant when he was only six weeks old.

His mum Karen explains: “The females in our family are carriers of this X chromosome-linked disease but it’s only boys who get it.

Luton teenager Riley Robertson-Browne who has triumphed over a rare genetic disease to become a top gymnastLuton teenager Riley Robertson-Browne who has triumphed over a rare genetic disease to become a top gymnast
Luton teenager Riley Robertson-Browne who has triumphed over a rare genetic disease to become a top gymnast

“Our first son, Jordan, was born with SCID and had a bone marrow transplant followed by chemotherapy when he was a baby.”

But the cord blood Riley received was so close a match it was just like a sibling’s. It enabled him to have a transplant without chemotherapy – a procedure that was a world first, even though doctors have since decided against repeating it.

There were some initial complications. Karen recalls: “We all lived at Great Ormond Street Hospital for months. The staff become your family – they were absolutely incredible.”

The primary school teacher even celebrated her 30th birthday on Riley’s ward.

Proud moment for gymnast Riley Robertson-Browne - meeting his hero, Olympic gold medallist Max WhitlockProud moment for gymnast Riley Robertson-Browne - meeting his hero, Olympic gold medallist Max Whitlock
Proud moment for gymnast Riley Robertson-Browne - meeting his hero, Olympic gold medallist Max Whitlock

The mother-of-four will always be grateful to the blood cord donor and describes how well her son responded to treatment: “The outcome has been unbelievable – other children who have SCID are still on immunoglobin (a type of antibody), but Riley no longer needs it. Doctors are still surprised by that but think it’s because he didn’t have chemotherapy.

"He does get more infections and colds than average, but his immune system is quite good and he eventually fights them off.”

She and Riley’s dad, robotics manager Keith, were at first anxious when Riley expressed an interest in going to a gym club.

"We were worried he’d pick up more infections,” she says. “But at the same time, we knew it was vital for his wellbeing to be around people his own age and to try new skills.”

The teenager trains for around 22 hours a week at a club in Stevenage and often works out with the regional squad on a Sunday.

"It’s a big commitment,” he admits.

But his perseverance and determination have resulted in him making it to the regional squad. He also won a silver medal in the individual all-round category in a recent national competition.

And his proud parents couldn’t be more delighted. Karen says: “He’s not only fit and healthy, but he’s representing his country in a sport he loves."

And she adds: “I hope Riley can provide some hope for other families going through the same thing. Because when you get a diagnosis like SCID, it’s devastating. You think you’re going to lose your child.

"I just want people to know that there can be real success stories. We could never have expected Riley to come as far as he has and we just feel so lucky.”

> Tuesday (February 28) was Rare Disease Day. As many as five children a day lose their lives to a rare disease, yet only five percent of UK research funding is spent on projects relating to child health.