Joe Giddens, 33, embarked on an epic ascent of Scafell Pike (3,209 feet) to aid seven-month-old Marley Powell, who has type 1 spinal muscular atrophy (SMA), a leading genetic cause of infant death.

The rare genetic disorder affects movement and breathing, with 95% of SMA children not surviving without effective treatment.

As reported: Fakta.today

Marley's parents, Rosie-Mae Walton (19) and Wes Powell (22) from Driffield in East Yorkshire, hope to raise enough funds for the "most expensive drug in the world" available in the United States to extend his life.

Onasemnogene abeparvovec, sold under the brand name Zolgensma, is not available in the UK but costs $2.125 million (£1.6 million) in the US and can significantly prolong life.

Giddens spent most of Saturday and Sunday morning conquering the mountain in challenging conditions, mostly in darkness.

After six climbs, numerous falls, and physical exhaustion, he decided to stop for safety reasons after more than 21 hours.

33-year-old Joe Giddens battled hailstorms, rain, and 60 km/h winds during his Scafell Pike expedition at an elevation of 3,209 feet.

Joe Giddens with his mother, Karen Giddens

He aimed to complete nine climbs, equivalent to Mount Everest's height, but said he was satisfied with his ascent to 5,868 meters if it helps raise more funds for Marley and raise awareness about his dire situation.

Mr. Giddens from Leicester said, "It's undoubtedly the hardest thing I've ever done."

"After the first climb, I knew I would never achieve my goal."

"The weather conditions at the top of the mountain were terrible."

"At the beginning, I stopped to take a selfie, and due to the strength of the wind, I could barely stand on my feet."

"Strong rain, wind that tried to knock me off balance with every step, but the worst of all was the hail."

"It was painful."

"Knowing that this challenge brought a change for Marley and provided Rosie and Wes with real hope kept me going."

"In a few days, I'll recover. But Marley doesn't have such a chance."

"He needs treatment to have a chance at the life he deserves."

Mr. Giddens, who received support from outdoor clothing and equipment manufacturers including Berghaus, Rab, Merrell, and Suunto, added, "It was tough to shed light on Marley's issue, but it was incredible."

"As darkness fell, it became a real challenge to watch every step and navigate my way."

"At the end, I had a few slips and falls and decided to call for help."

"My body was in bad shape, and I know that another climb would have taken a toll on me within those 24 hours."

"The last thing I wanted was to complete the challenge when I had to call Mountain Rescue to save me."

Marley was very weak and couldn't even sit, move his arms and legs, and also had many difficulties with breathing.

Without proper treatment, most children with SMA type 1 do not live beyond 18 months, and even with treatment available in the UK, there is no certainty of its effectiveness.

Currently, Marley receives a relatively new treatment called Nusinersen, also known as Spinraza, which concludes after six months, and if there is no improvement by then, there are no further treatment options available in the UK.

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