Sports-mad Ben Booth was 15 when he noticed that running and playing rugby were becoming increasingly difficult.
Two years later, and after a number of tests, he was given the devastating news that he was suffering from muscular dystrophy, a progressive and to-date incurable muscle wasting disease.
Now 21, Ben suffers from the rare genetic disease LGMD (Limb Girdle Muscular Dystrophy) which particularly affects muscles around the pelvis and shoulders and in some cases causes weakness in the lungs and heart.
At the moment the condition makes it difficult for him to negotiate stairs - which is why his decision to take part in a daring climbing challenge seems particularly ambitious.
Ben, who is studying for a Master’s degree in Electronic and Electrical Engineering at the University of Huddersfield, is preparing to participate in a 25km climb which will be the equivalent of ascending Olympus Mons on Mars, the highest mountain in the solar system.
The team climb, which will be tackled in relays over a weekend in April, will raise money for the B Baggins Foundation for Limb-Girdle Muscular Dystrophy, a charity based in Hartshead which aims to increase awareness and funds for research.
Ben is not sure how much of the climb, which will take place at ROKT Climbing Gym in Brighouse, he will be able to complete but it is his aim to undertake the first leg of the challenge if his health is up to it.
Now he is hoping that other climbers, volunteers and groups of friends will join him for the non-stop climb on April 26 and 27.
Ben said: “Living with LGMD is a continual challenge and simple tasks such as brushing your teeth or shaving become exhausting. I got the diagnosis when I was 18 and very active and into sport so it was quite a blow. The worse thing is that no-one can tell exactly how it is going to develop and what the outlook will be for me.
“I try to eat healthily and I have a lot of physio to help with mobility. At the moment I find it hard to climb stairs or to carry things.
“I try not to look too far ahead. If I’ve done a lot of walking or have had a very busy day I certainly feel it the next day but I try not to let it stop me doing what I want to do. I am an optimistic person and it is important to me to get the most out of life.”
Ben, who lives in Mirfield, said that MD can strike at any age and that a great deal of research remains to be done into the condition which prevents muscles from regenerating.
Organising the climb - which will be the equivalent of 77 ascents of the Eiffel Tower - is Ben’s 23-year-old brother Sam who is co-founder of the B Baggins Foundation.
He said: “Due to the rarity of LGMD, we have had to continually think outside the box when it comes to fund-raising. These days lots of people run marathons or do sponsored walks so we had to come up with something different.
“We are hoping to get 200 people signed up for the challenge which could take around 25 hours to complete. It will involve 1,191 ascents of the 21m lead wall at ROKT. I enjoy climbing so I thought it would be a good way to capture people’s imagination - as far as we know this climb has not been tackled before.”
Ben said it was through his mum’s determination that he was able to get a diagnosis of MD and specialist help at the Muscle Centre at Newcastle University, the leading centre in the country for research into the condition.
“We are a very close family and we all help each other. We want to do what we can to enable the charity to do its vital work. Getting help for sufferers is too much of a postcode lottery.”
Anyone who is interested in joining the challenge and attracting sponsorship for the B Baggins Foundation can visit www.bbaggins.org or contact Sam on 077075 11117.