The parents of seriously ill baby Marley Powell are hoping a photographer’s epic challenge to raise cash for the “most expensive drug in the world” will help ensure his first Christmas is not his last.
Rosie-Mae Walton, 19, and Wes Powell, 22, are vowing to make Marley’s Christmas as special as possible as Joe Giddens makes his final preparations for a gruelling winter fundraising bid to help raise vital funds.
Mr Giddens will spend 24 hours at the weekend going up and down England’s highest peak, the 3,209ft (978m) Scafell Pike – aiming to climb it as many times as possible while carrying a 50lb (23kg) pack.
Seven-month-old Marley has the rare genetic disorder Type 1 spinal muscular atrophy (SMA) and 95% of babies with SMA do not live past 18 months without effective treatment.
Mr Giddens 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 dollar (£1.6 million) price tag.
Ms Walton 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.”
Ms Walton, who lives with Marley and Mr Powell in Driffield, East Yorkshire, said: “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.
He is currently receiving the relatively new Nusinersen treatment, also called Spinraza, which finishes in six months’ time and there are no more UK treatment options if he has not improved by then.
So, his parents are pinning their hopes on the vastly expensive gene therapy drug Zolgensma, or AVXS-101, which they believe could dramatically prolong his life expectancy.
Mr Giddens – who works for PA Media, the national news agency for the UK and Ireland – has set himself the target of making it up and down the mountain nine times, which would be the equivalent of climbing higher than Mount Everest..
But he will only have eight hours of daylight, as well as the high probability of snow and temperatures of minus 11C (12.2F) at the summit.
“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,” said the 33-year-old, from Leicester.
“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.”
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.”
Mr Giddens, who has received support from outdoor clothing and equipment manufacturers including Berghaus, Rab, Merrell and Suunto, will start his 24-hour challenge on Saturday morning.
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.