“Why I’m cycling 55 miles for GOSH Charity”

24 Aug 2022, 3:10 p.m.

A photo of Matthew holding Eli. Both are standing outside and smiling to camera.

One-year-old Eli was rushed to Great Ormond Street Hospital (GOSH) at four months old. He was diagnosed with a rare and complex heart condition called Scimitar syndrome. After four operations, he’s now back home.

In September, Eli’s dad, Matthew, will be taking on the London to Brighton Cycle for GOSH Charity. His fundraising will go towards a new Echocardiogram (Echo) for the hospital. Here, he tells us more about Eli’s journey so far.

Realising something wasn’t right

“Eli was always a very happy, relaxed baby. Initially, we didn’t think anything was wrong.

“Then, slowly, we noticed that feeding became difficult. Eli didn’t want his milk. He slept excessively during the day and wasn’t gaining weight as expected.

“Despite these troubles, Eli would still get on with life. He was still the same happy, smiling boy.

“When he was four months old, he had an echocardiogram. The scan showed that something was not right with his heart.

“From there, we were ‘blue lighted’ to our local hospital, where Eli received oxygen support.

“Shortly after, we were transferred to Great Ormond Street.”

Life on Bear Ward

“Eli was diagnosed with a rare congenital heart defect called Scimitar syndrome.

“We stayed at GOSH with Eli for four months, on Bear Ward (which cares for children with cardiac conditions).

“Eli’s condition was investigated extensively and the highly specialist cardiac doctors, consultants, and surgeons provided every possible recourse to help save our son.

“Without GOSH, Eli would not be with us today.

“The future of Eli’s condition is incredibly uncertain, and we know that he will need more than the four operations he has had so far. But we know that he is receiving the absolute best of care from the best doctors, nurses, and other healthcare professionals in the world.”

Eli lying in his bed at GOSH, with a feeding tube in his nose. Looking at the camera.

Eli today

“Since being discharged from GOSH, Eli has excelled at home.

“Whilst we are still very aware of his condition and the impacts that small viruses can have on him, he is able to keep being the happy, smiling boy that we love and adore.

“Eli is a very affectionate, happy, and curious little boy, with a passion for Cocomelon and throwing food on the floor. He adores reading his flipbooks and going for longs walks in the park.”

Giving back to GOSH

“GOSH Charity provided nearby accommodation for us while Eli was at GOSH – so we could stay close.

“We’re now raising vital funds for the hospital. Specifically, we’re raising money towards a new Echo – the same equipment that helped us to understand and monitor Eli’s condition.

“To help raise money for GOSH Charity, Eli’s aunties and uncles recently ran the Asics London 10km through London. This September, I’ll be cycling 55 miles as part of the London to Brighton Cycle.

“Right now, training for the ride is going great! I’ve been cycling the 17km to and from work daily and added extra onto my homeward journeys too.

“Opportunities to train while taking care of Eli has been challenging. It has meant some early morning starts. I’m certainly looking forward to finishing an exceptionally long ride (at least much longer than I’m used to!) and seeing my wife Sarah and Eli at the finish line.”

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