Man with extremely rare disorder to take on Everest trek to support Demelza

Archie Thompson was diagnosed with MOMO* syndrome, a condition so rare there are less than 10 recorded cases worldwide. The disorder is characterised by excessive birth weight, significant weight gain beyond typical growth patterns, abnormally large head size and eye-related issues.

Archie, now 24, weighed four stone by the time he was 15 months old and had reached six stone by age two. The condition placed a huge strain on his heart and lungs and doctors told his family they didn’t expect him to live past the age of four.

But he defied the odds and is now training to take on the Everest Base Camp trek in September in aid of Demelza, which supported him and his family in the early stages of his condition.

Archie had suffered two heart attacks by the age of two and used a wheelchair, before eventually learning to walk by the time he started school. By age three, he and his family were being supported by Demelza and he has fond memories of the charity’s hospice in Sittingbourne, where he recalls loving the hydropool and sensory lights.

Despite his difficult start and bleak prognosis, Archie says he now lives a pretty normal life; working as a senior bar manager at a hotel and enjoying long hikes – something he found a love of after moving to the Lake District. And now he’s using that hobby to give back to the charity that means so much to him by taking on the epic trek.

Archie, who now lives in Derbyshire, said: “I originally saw the challenge advertised in late 2024 and thought about it, but it was a bit of a pipedream. But then I looked into it more and started to think it was possible, so I signed up.

“It’s a bit of a bucket list thing of mine and the perfect charity to do it for. I’ve never done high altitude walking but it’s going to be a great laugh with a great bunch of people and I’m sure it’s going to be one hell of a big emotion when we reach Base Camp.

“I count my lucky stars every day. I got pretty lucky with the effects of the condition but I don’t know the future. It’s a case of going day by day.

“There’s no point stressing over something you can’t really change. We are dealt the cards we are dealt, it’s how you play it. It’s about quality of life and making the most of it, live every second and don’t live with regrets.”

Demelza’s Everest trek is one of the charity’s most ambitious challenges yet and will see participants taking on a demanding 16-day journey to the famous camp at the base of the world’s highest mountain.

*MOMO is an acronym of the four main aspects of the disorder - macrosomia (excessive birth weight); obesity; macrocephaly (excessive head size) and ocular abnormalities.