Scafell Pike 24-hour mountain climb for babys US treatment

Scafell Pike 24-hour mountain climb for babys US treatment

A photographer is spending 24 hours climbing up and down England’s highest mountain to raise money for treatment which could prolong the life expectancy of a baby with a rare genetic disorder.

Marley Powell was born with type 1 spinal muscular atrophy (SMA).

His parents want to take him to America for a new therapy, described as “the most expensive drug in the world”.

To help raise funds, Joe Giddens is scaling Scafell Pike as many times as he can over 24 hours.

The majority of babies born with SMA – which is similar to motor neurone disease – do not live beyond 18 months.

Seven-month-old Marley is currently receiving the 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.

His parents, Rosie-Mae Walton, 19, and Wes Powell, 22, from Driffield, East Yorkshire, want to take him to America for the newly-developed Zolgensma treatment which uses gene therapy to minimise the effects of the illness.

However, it has a price tag of $2.1m (£1.6m).

Mr Giddens, from Leicester, only came up with the idea of “Marley’s Mountain Mission” two weeks ago.

The Lake District peak is 3,209ft (978m) high and most of the challenge will be undertaken in the dark as it is one of the shortest days of the year.

The 33-year-old, who works for a national news agency, said: “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.”

The marathon climbs are being attempted on Saturday into Sunday.

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