Joe aims high to help baby Marley’s appeal
CLIMBS ENGLAND’S HIGHEST PEAK SIX TIMES IN A DAY TO RAISE CASH FOR £1.6M TREATMENT
A PHOTOGRAPHER has scaled England’s highest peak six times in 24 hours to raise money for a baby with a rare genetic disorder.
Seven-month-old Marley Powell has the rare genetic disorder Type 1 spinal muscular atrophy (SMA) – 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, battled rain and 60mph winds as he trekked up and down 978m (3,209ft) Scafell Pike six times while carrying a 50lb pack to raise money to send Marley to the United States for a new therapy treatment costing £1.6 million
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.
“With this 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.
“My message to Joe is we still think he is crazy, 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.”
Marley’s condition is similar to motor neurone disease 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 gene therapy drug Zolgensma, which they believe could dramatically prolong his life expectancy.
Speaking before his trek earlier this month, 33-year-old Joe 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.
“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 and how to donate can be found at: