A Leicester man is going to great heights to raise money for a baby with a rare genetic disorder which means he may not live beyond 18 months.
Seven-month-old Marley Powell has the rare genetic disorder Type 1 spinal muscular atrophy (SMA), and 95 per cent of babies with SMA do not live past 18 months without effective treatment.
His parents, Rosie-Mae Walton, 19, and Wes Powell, 22, are trying to raise cash for the ‘most expensive drug in the world’ to help ensure Marley’s first Christmas is not his last.
Joe Giddens, from Leicester, will spend 24 hours at the weekend going up and down England’s highest peak, Scafell Pike, aiming to climb it as many times as possible while carrying a 50lb pack.
Joe is tackling the Lake District peak in the height of winter to raise cash to send Marley to the United States for treatment with a new therapy which is described as “the most expensive drug in the world” due to its $2.1 million (£1.6 million) price tag.
Marley’s mum Rosie-Mae said: “As Christmas is such a special time of year, everyone just wants to spend it with family.
“We will be staying at home for Christmas Day because we cannot risk taking Marley out when he’s not having a good day and him becoming worse.”
She added: “With this Christmas being a chance of Marley’s only Christmas if he does not improve, we have to try make it as special as we can, as we do every day of his life, as we don’t know what could come next.
“We cherish every moment with him.”
She added: “My message to Joe is that we still think he is crazy that he is even doing this, but we honestly cannot thank him enough for all he is doing.
“The effort he is and has put in to raise money is amazing.
“We wish him all the luck on his journey and he really is an amazing guy.”
Marley’s condition is similar to motor neurone disease (MND), and makes his muscles extremely weak, stops him moving his arms and legs, and causes breathing and numerous other life-limiting difficulties.
His parents, who live in Driffield, East Yorkshire, are pinning their hopes on the vastly expensive gene therapy drug Zolgensma which they believe could dramatically prolong his life expectancy.
Joe has set himself the target of climbing up and down the mountain nine times, which would the equivalent of climbing higher than Mount Everest.
The 33-year-old said: “It’s only been two weeks since the idea of Marley’s mountain mission was dreamt up so I’ve crammed in whatever training I can.
“Hikes in the evening to get used to the dark, late-night gym sessions to see how the body holds up when I’m already tired. Just anything to try and get comfortable at being uncomfortable.”
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He added: “Rosie and Wes are really looking forward to their first Christmas with Marley after what has been a really tough year for them – but they’re also faced with the prospect that this could be their only Christmas as a family if we can’t raise the funds for Marley’s treatment.”
Ms Walton and Mr Powell have said if they do not reach their target, or the drug becomes available on the NHS, all the money donated will go to fund Marley’s ongoing care, including specialist equipment.
Details of the challenge, Marley and how to donate can be found at justgiving.com/crowdfunding/marleysmountainmission.