Man with extremely rare condition completes Everest Base Camp trek for Demelza
A man with an extremely rare genetic condition has completed a trek to Everest Base Camp to raise funds for Demelza, which supported him as a child.
Archie Thompson has MOMO* syndrome - a condition so rare there are less than 10 recorded cases worldwide - and when he was diagnosed, his family was told he was unlikely to live past the age of four.
But Archie, now 24, defied the odds and last month, completed an epic trek to reach Everest Base Camp to raise funds for Demelza.
By age three, Archie and his family were being supported by Demelza and he has fond memories of our hospice in Kent, where he recalls loving the hydropool and sensory lights.
Archie, who now lives in Derbyshire, was one of a group of 23 fundraisers who took on the trek. After flying into Katmandu in Nepal, the hikers took on a demanding journey to reach the famous camp at the base of the world’s highest mountain.
As well as spectacular scenery, the group endured snow, sun and the effects of altitude but after eight days of trekking and supporting each other, they all reached Base Camp which stands at 5,364m.
Their descent back down the mountain was cut short due to the weather and they ended up with a helicopter ride back to Katmandu to celebrate their impressive achievement.
Archie, who works as a senior bar manager at a hotel, had trained hard for the challenge over the last 18 months and said before the trek that it was something of a bucket list thing to do – and it didn’t disappoint.
“It was everything I hoped it would be,” he said.
“After 18-20 months of planning, preparing, training and researching, to actually finally get there and see it all in person was quite a surreal experience - to know all the hard work and training had paid off. It was absolutely incredible.”
Archie had been concerned about how the altitude would affect him and he said it did hit him harder than he anticipated, but the group pulled together and they all got each other through.
He said: “On Base Camp day I did feel nauseous and had a bit of a headache, but it was just a case of going slowly, taking breaks when needed and drinking a lot of water.
“They were a cracking bunch of people all supporting each other – we all just cracked on and got on with it.”
Archie counts his lucky stars every day he got “pretty lucky” with the effects of his condition, but says he’s always felt it’s about making the most of it and living every second without regrets.
He said he’d recommend taking on a challenge like this to anybody.
“I’ve got memories from this trip to last a lifetime,” he added.
*MOMO is characterised by excessive birth weight, significant weight gain beyond typical growth patterns, abnormally large head size and eye-related issues. It is an acronym of the four main aspects of the disorder - macrosomia (excessive birth weight); obesity; macrocephaly (excessive head size) and ocular abnormalities.
"To actually finally get there and see it all in person was quite a surreal experience - to know all the hard work and training had paid off. It was absolutely incredible.”
