Nate Lygo’s epic challenge, which is the latest of his family’s fundraisers to help pay for research into Duchenne Muscular Dystrophy, began last Wednesday and is expected to finish on Wednesday.
The Lygo family have raised more than £60,000 for Duchenne UK after a friend’s son was diagnosed with the devastating condition at four-years-old.
Now 13, their friend, Tom, can no longer walk and needs help to sit up from lying down.
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Nate’s route has taken him along the Cotswold hills from Chipping Campden to Bath and he has been camping and staying with family members and friends overnight during the journey down the trail.
As with his brother and sister, when they did long distance walks for charity at a similar age, mum, Nicki, has gone along as ‘the packhorse’, to carry the camping gear, stove, food and clothing.
Before setting out, Nate said: “Our friend Tom deserves to be able to continue doing the things he loves in life, without this disease stopping him.
“I’m not as nervous as I thought I would be, but I am a bit worried about getting it done in the eight days we have available.
“Mum said I can snack on chocolate every day; that’s one of the main bonuses of doing this walk, apart from helping Tom.”
Duchenne is a heartbreaking childhood muscle wasting disease which is currently 100 per cent fatal.
Affected children usually end up wheelchair-bound by their early to mid-teens and life expectancy, although increasing thanks to research, is still only around the mid-20s.
Nicki, who is a junior doctor, said: “We need a cure or at the very least, treatments to help slow progression, whilst we develop a cure.
“I’m really proud of Nate for getting out and challenging himself with something this big, to help our friend.”
Nicki explained that, despite the outlook currently being very bleak for sufferers of Duchenne, there is very real hope, adding: “Owing to clinical trials that are currently underway, it is widely thought that this generation of children with Duchenne will either be the last to die or the very first to survive.
“This walk is Nate’s contribution to helping make the latter a reality.”
Go to www.endduchenne.co.uk to see the family’s fundraising website.