John's Urban Challenge for Sebastian

03 October 2019

Sebastian celebrated his third birthday in September surrounded by family and friends, playing and laughing as every toddler should. You’d never know that he had been through two lifesaving open heart surgeries at Evelina London before he was even two years old.

A man smiling with his young toddler son
Sebastian (right) with his father John

As part of his son’s birthday celebrations and to say thank you, Sebastian’s dad, John, took on Guy’s Urban Challenge in the year Evelina London turns 150.

Sebastian’s story

Sebastian was three months old when doctors discovered he had a hole in his heart. He was being treated for bronchiolitis that had developed from a bad cold, but it wasn’t until he collapsed at home that he ended up in his local hospital.

‘Sebastian was struggling to feed or put on weight,’ recalls John. ‘In December 2016 he became very ill and after passing out at home was rushed by ambulance to our local hospital.

‘He spent his first Christmas there which was an extremely scary time for all the family and a lot for us to take in.’

Sebastian’s condition meant that his lungs and heart had to work harder. This, in turn, is what caused Sebastian to have trouble feeding and putting on weight.

‘So much goes through your head,’ says John. ‘We were very concerned about what our son was having to go through, but we also had our then two-year-old daughter to think of. We struggled to explain to her what was happening and to make sure Christmas was still fun for her.’

In safe hands

After their difficult Christmas, John says they felt reassured when Sebastian was transferred to Evelina London.

‘Once we were referred to Dr Aaron Bell at Evelina London, we knew we were in safe hands. All of the staff were extremely helpful and calm and were happy to answer any questions or concerns we had.’

Sebastian had open heart surgery at Evelina London when he was five months old, and the hole was successfully repaired.

Later that year, however, he started to suffer from breathlessness. Dr Bell and the cardiology team ran multiple tests and discovered that scar tissue had formed in Sebastian’s heart, which was causing a narrowing of the artery.

The family faced more worry when it was decided that Sebastian would need another operation. In July 2018, at 22 months old, he underwent his second open heart surgery to cut away the scar tissue.

‘Even though we’d been in the position before and we had confidence that the surgery would be a success, the fear we had the first time around didn’t go away,’ says John. ‘However, less than 24 hours after the surgery, Sebastian was running around the playroom on the ward like nothing had happened.

‘His recovery has been astounding. He’s just like any other little boy and has just celebrated his third birthday. You wouldn’t know that he’d been through two huge surgeries at such a young age.’

John (right) sporting his Evelina London T-shirt, with baby Sebastian
John (right) sporting his Evelina London T-shirt, with baby Sebastian

A cause close to his heart

John joined just under 300 other aspiring athletes to take on Guy’s Urban Challenge in September. It was an amazing day, with people running, cycling and climbing the 628 steps of Europe’s tallest hospital building, Guy’s Hospital tower.

John was cheered on by his wife, Julie, Sebastian and their five-year-old daughter, Grace. He smashed his target and raised a fantastic £389 for Evelina London – well done!

The money will go towards the cardiology department, where Sebastian is still monitored as an outpatient. His contribution is part of the wonderful Cardiology Kids campaign, a patient-led initiative which aims to raise £150,000.

‘Our experience with Evelina London has been so overwhelmingly positive and we really can’t thank the cardiology team enough.’

Guy’s Urban Challenge is over for this year, but you can join our mailing list and be the first to hear about the next incredible event that will take place in 2020.

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