Couple's Sahara Desert challenge for rare genetic condition
- Credit: Hutts
A husband and wife team are in the final stages of preparation for "the hardest foot race on Earth" to raise funds and awareness of a life-limiting condition affecting a neighbour's son.
Kim and Alasdair Hutt, who live in Potters Bar, will be competing in the Marathon des Sables, a gruelling 150 mile race across the Sahara Desert over six days, during which they will be carrying all of their own food, water and equipment.
They started training for the event after completing an Iron Man competition in August 2019, but the pandemic meant it has been rearranged three times, and are now expecting to begin the race on September 20. Their training has involved running up to 85 miles a week for the past two years to maintain their fitness levels.
Kim said: "To make things tougher, we have to carry everything for the full seven days: food, cooking equipment, bedding, clothing, medical kit, you name it. The only thing provided by the race organisers is water, of which you get through approximately 13 litres per day, and collect along the way. The race sees daytime temperatures exceed 50C degrees, and night time lows of 0C.
"I had always said I would NEVER enter this race. I hate sand and I'm not much good in the heat! But then, three years ago a couple of friends did it and I was instantly inspired.
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"Usually Ali takes a bit of sleeve tugging and persuasion to enter some of the events that I suggest, but when I suggested this one, he said yes without taking a breath.
"It's something he's always wanted to do. I didn't really know that."
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She added: "Since January 2021, we have completed 371 hours of training and run 2,243 miles. It has been relentless, but we are doing this for a good cause."
The Hutts will be supporting Annabelle's Challenge, the UK's leading charity for vascular Ehlers-Danlos Syndrome (vascular EDS), a rare genetic disorder.
Kim explained: "Our close friends and neighbours have a little boy, Hugo who was diagnosed when he was just two years old. As an injury and physiology specialist, I had noticed that Hugo's physical milestones were not the same as other children of the same age, and he looked extremely hypermobile.
"I suggested that his mum request an investigation into EDS as I had studied and researched this condition in my past, and we were devastated to learn that Hugo had the vascular type."
Of all the types of EDS, this is the most serious as it is associated with a risk of sudden death due to major blood vessel or organ rupture at any age.
Hugo's mum Tori said: "I am also exceptionally grateful to Kim for identifying certain things and highlighting EDS to me early on with Hugo, otherwise we might not have a diagnosis now. Unbelievably, she had come across it before through her work and after researching, thought Hugo might have a form of it. Even though other health professionals I had spoken to up until then had glossed over it!
"More and more we have started to see the impact it is having on Hugo’s daily routine and how careful we have to be with him, but whilst still letting him have his own independence.
"We want him to lead a normal healthy and active life like any nine-year-old. He wants to run around and play like all his friends, which also means that he may have the odd knock and fall.
"However Hugo doesn’t knock and fall like other children and the simplest fall can often lead to A&E as his skin is so fragile. It is an unknown for us and our dear Hugo is almost like a ticking time bomb.
"We don't know what the future holds for him but at least with an early diagnosis we can direct his lifestyle in such a way that he can avoid certain situations that could be dangerous."
To support the Hutts' fundraising efforts visit www.justgiving.com/kim-hutt5