Marathon challenge for student born with hole in his heart

A student who has a hole in his heart is taking part in the London Marathon to raise money for the hospital trust that saved his life.

Xavier Norton-Edwards spent 59 nights in hospital in his first 6 months and had undergone 2 major heart operations by the time he was six years old.

His parents vividly remember Xavier being rushed to Guy’s Hospital when he was just 6 weeks old after he failed to respond to treatment for bronchiolitis at his local hospital. The on-call cardiologist, Prof Eric Rosenthal, realised there was a hole in his heart.

Xavier’s mum, Vanessa, feared that they would lose him as the news came almost 3 years to the day after their first son, Dylan, passed away. Further tests identified that Xavier also had a narrowed aorta and a connection between the lung artery and the aorta. 

At the beginning of 2006, Xavier became one of the first patients to receive treatment at the new Evelina London Children’s Hospital building, with regular monitoring and frequent tests including Echo scans, MRIs and exercise tests. He really struggled with PE as a child as he was unable to keep up with fellow pupils due to his condition.

Vanessa said: “Physically he was very delayed so he’s been playing catch up all his life. The fact he’s doing the marathon, it’s almost unbelievable.

“When he was a baby, we were once told that simply eating was like running a marathon for him, which is quite funny to look back on now.”

Xavier began running more regularly when he was around 16 years old, and then when the Covid pandemic started he took to running around his local park in Farnborough, Hampshire.

He said: “I wasn’t good at football, rugby and cricket, and running seemed less technical as you just have to think about putting one foot in front of the other, and it’s just you against yourself.”

Now 20 years old and studying French, Spanish and Italian at St Andrew’s University, Xavier has been training for the marathon at West Sands Beach, where the iconic running scene from Chariots of Fire was filmed. 

Xavier said: “Evelina London was a second home to me - I love the place. I’m feeling happy that I’m running the marathon for charity although I’m very nervous. But through sheer determination and stubbornness I’ll get through it.”

He hopes to complete the distance in around 5 hours – not least because he needs to catch a flight back to Scotland following the race as he has a two hour Spanish exam the following morning.

A large group of friends and family will be cheering him on including Vanessa, his dad, Rob, his sister, Paige, and his two best friends and their families.

Xavier’s family benefited from meeting others who were going through similar experiences via the Evelina Children’s Heart Organisation (ECHO). Xavier moved under the care of the St Thomas’ adult congenital heart unit when he turned 16 years old.

“Right from the beginning we felt supported,” Vanessa added. “You always hear about the NHS being under pressure but when things needed to be done they were, we never felt rushed and they always made the time to tell us what was happening.”

Dr Thomas Krasemann, former consultant paediatric cardiologist at Evelina London who had Xavier under his care for many years, and is now working in Rotterdam, said: “I am both humbled and delighted that Xavier will be taking part in the London marathon to raise money for the Evelina. He has come such a long way since his first hospital visit as a small baby. I remember us doing squats together ahead of carrying out Echo tests.”

Prof Eric Rosenthal, consultant paediatric cardiologist at Evelina London, said: “It is so rewarding to see how well Xavier is doing now after such a difficult start and I’m really thankful that he is fundraising for us.” 

Evelina London Children’s Hospital is one of only two purpose-built, dedicated, children’s hospitals in the whole of London. Our teams provide healthcare services to more than 104,000 children and young people every year.

Donate to Xavier’s fundraising.