A story about a boy who against the odds, never stops.

My nephew and namesake Seth was born with a condition called Prader-Willi Syndrome (PWS) in 2011.

It’s a disorder that includes weak muscles, slow intellectual and physical development.

It also has another defining characteristic. Those with PWS never feel full, and so live with a relentless and challenging hunger which can lead to obesity and diabetes. 

Seth is now 11. 

At four days old he started daily physio and he hasn’t stopped since.

Weekly hydrotherapy, swimming lessons, football classes, gymnastics, horse riding, trampolining, weight training and cycling for a decade plus.

In so many of these activities, Seth cannot compete with his non PWS friends. However he never shows signs of self-pity, never refuses to take shortcuts and never quits. He participates with a stoic determination and with joy.

He once ran a cross country race against hundreds of boys. He finished 411th out of 411. At the very back of the pack by a long stretch, he arrived in sight of his parents, red faced, exhausted but with a smile on his face as he completed the race without stopping.

The following year, he determined to not finish last. And he didn’t. This time arriving in sight, red faced, tired but with the pack.

Something else that never stops? His constant hunger, fatigue and physical challenges. In spite of this, he rarely complains or says that life is unfair but powers forward cheerfully. The boy wakes everyday with dogged determinism and a lust for life.

In 2022, he completed a mini triathlon, raising thousands of pounds for PWSA, the leading charity for the condition. 

Once again, on the track, in the pool and on the bike he refused to stop.

His parents (who have also not stopped in their inspiring and diligent care for Seth) paid me the ultimate compliment back in 2011 by naming him after me. (Unless it was actually Seth from the OC. I’ll never truly know I guess).

We share the same first name, surname and even middle name initials. 

For years, I’ve wanted to show Seth how inspiring he is to me. And all of our family. And challenge myself to something that requires not stopping.

This is why I’m running the London Marathon in April 2024 for Seth. And for PWSA UK.

And I will try to avoid stopping*

Thanks for reading and for your support. It means the world to me, Seth and his family.

*toilet breaks and selfies don’t count.