Musselburgh five-year-old with rare heart condition raising money for hospital which saved his life

A five-year-old with a rare heart defect from Musselburgh is preparing to run the Kids’ Kilometre at this year’s Edinburgh Marathon Festival to raise money for the hospital which saved his life.

Ryan was diagnosed with complete congenital heart block, which means that his heart can’t beat as fast as he needs it to (Pic: Sherena Kerr/JustGiving)

Ryan Kerr, who was diagnosed with Complete Congenital Heart Block at his mum’s 20 week scan in June 2015, has raised over £1,200 so far for Glasgow Children’s Hospital Charity.

The rare heart condition means that his average heartbeat is just 40bpm, when it should be triple the beats per minute.

At her 20 week scan, Ryan’s mum Sherena was told her baby would likely not survive the complications and it was unlikely he would reach full term as a condition called hydrops would eventually set in where the body fills up with fluid.

He was treated by foetal medicine unit and the cardiologists from Glasgow Children’s Hospital and will require treatment throughout his life (Pic: Sherena Kerr/JustGiving)

She researched an experimental drug to halt the hydrops, but after being told the hospital could not provide it she requested a second opinion and was then seen at Glasgow Children’s Hospital where doctors agreed to try the drugs.

On the JustGiving fundraiser page, Sherena wrote: “For Ryan to survive he needed to hang on in until he was big enough for him to be delivered and a pacemaker fitted.

“We were told that given Ryan’s unique rare situation there was nothing they could do, and babies that are born before full term with the condition and the surgery that Ryan needed don’t usually survive.”

Miraculously, the treatment worked and Ryan was born two months premature and was taken in for heart surgery the day after he was born.

Sherena added: “He recovered fast, he amazed everyone at how well his tiny body coped with being premature but with the added strain on his heart and surgery.

“They had never done this surgery on a baby so young, he was the first in Scotland.”

At age two, after Ryan’s pacemaker leads snapped, he needed the whole operation done again.

“This time was harder on him, and recovery was long and painful. He was terrified but the staff did all they could to make him happy as they could,” Sherena added, “Routine appointments can be hard on him, but everyone is always patient and have plenty of things to help distract him and get a smile from him.”

Ryan, now a P1 pupil at Burgh Primary School, is set to run the marathon on Saturday May 29 provided Covid-19 restrictions allow him with his family cheering him on.

William McGowan, head of fundraising at Glasgow Children’s Hospital Charity said: “Glasgow’s Royal Hospital for Children is the national provider of paediatric cardiology services in Scotland, meaning that babies, children and young people arrive from all corners of the country for specialist and often life-saving cardiology care.

“With the help of inspiring fundraisers like Ryan, Glasgow Children’s Hospital Charity raises money to fund enhanced medical equipment, support services, research and play programmes, to support young patients, their families, and the NHS heroes who care for them.

“Ryan’s remarkable story is one of great strength and courage, and we are very proud to have him fundraising with us. We would like to share a special thank you with Ryan for his wonderful fundraising efforts so far, and wish him lots of luck for his big challenge!”

Those wishing to donate can do so on the JustGiving page.

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