Fundraising photographer tackles mountain storms to support seriously ill baby

Dave Higgens, PA
·5-min read

An award-wining photographer has battled hailstorms, freezing rain and 60mph winds to scale England’s highest peak six times in 24 hours in a bid to give a seriously ill baby a chance of a longer life.

Joe Giddens, 33, picked some of the worst weather of the winter so far to attempt an epic challenge on the 3,209ft (978m) Scafell Pike to help seven-month-old Marley Powell, who has a rare genetic disorder.

Marley’s parents Rosie-Mae Walton, 19, and Wes Powell, 22, from Driffield, East Yorkshire, are hoping to raise enough money so he can access “the most expensive drug in world” in the United States in a bid to make sure this Christmas is not his last.

Mr Giddens, who is a photographer with PA Media, the national news agency for the UK and Ireland, spent most of Saturday and the early hours of Sunday morning tackling the mountain in dreadful conditions, mostly in the dark.

After six ascents, numerous falls and with parts of his body failing, he decided to stop after more than 21 hours, for safety reasons.

He had set a target of nine ascents, which would have been the equivalent of climbing the height of Mount Everest, but said he was pleased with his 19,254ft (5,868m) of ascent if it has helped raise more cash for Marley and awareness of his plight.

Mr Giddens, from Leicester, said: “That’s without the doubt the hardest thing I’ve ever done.

“I knew after the first ascent that nine times was never going to be achievable.

“The weather conditions in the top section of the mountain were horrendous.

“I stopped to take a selfie at the summit on the first couple of laps and could barely stay on my feet due to the strength of the wind.

“The driving rain, the wind that was trying to knock me off balance with every step, a few flurries of snow but the worst of all was the hail.

“That was painful.”

Baby Marley  who has Type 1 Spinal Muscular Atrophy (SMA) – a condition similar to motor neurone disease (MND) (Joe Giddens/PA)
Baby Marley who has Type 1 spinal muscular atrophy (SMA) – a condition similar to motor neurone disease (MND) (Joe Giddens/PA)

He said: “Knowing this challenge was making a difference to Marley and giving Rosie and Wes real hope kept me going.

“In a few days I’ll have recovered.

“Marley doesn’t have that luxury.

“He needs this treatment to give him a chance of a life that he deserves.”

Mr Giddens, who has received support from outdoor clothing and equipment manufacturers including Berghaus, Rab, Merrell and Suunto, said: “It had to be tough to draw attention to Marley’s cause but that was brutal.

“As soon as it got dark, it became a real challenge watching every step and trying to navigate my way.

“I had a few slips and falls on the sixth descent and when I reached the bottom with a couple of hours left on the clock, I decided to call it quits.

“My body was in a bad way and I know another ascent would have taken me well over the 24 hours but I don’t think my body would have got me up and down another time without risk of serious injury.

“The last thing I wanted was to finish the challenge having to call out Mountain Rescue to get me off the mountain.”

Joe Giddens (Owen Humphreys/PA)
Joe Giddens (Owen Humphreys/PA)

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.

The 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 US gene therapy drug Zolgensma, or AVXS-101, which is described as “the most expensive drug in the world” due to its 2.1 million dollar (£1.6 million) price tag.

They are currently preparing to Marley’s Christmas as special as possible as there is a chance is could be his first and last.

Rosie-Mae Walton, 19, and Wes Powell, 22, with their son Marley (Family/PA)
Rosie-Mae Walton, 19, and Wes Powell, 22, with their son Marley (Family/PA)

Ms Walton said: “I want to say a massive, massive thank you to Joe for even doing the challenge.

“He is one amazing guy.

“I honestly cannot put into word how scared I felt about him doing it especially last night because it’s just dark, cold and horrible.

“I felt so scared for him being out there and not knowing he’s OK or even alive.

“That fact he risked his own life for our little Marley is just wonderful.”

Joe Giddens scaled Scafell Pike six times (Owen Humphreys/PA)
Joe Giddens scaled Scafell Pike six times (Owen Humphreys/PA)

She said: “We hope to get Marley the treatment to give him the longer life expectancy that he deserves and live a happy and healthy life without struggling.

“We hope to just have our Marley in our life.”

Ms Walton and Mr Powell have said that, even if they do not raise enough to fund Zolgensma, all money donated will go to fund Marley’s ongoing care.

Details of the challenge, Marley and how to donate can be found at justgiving.com/crowdfunding/marleysmountainmission.