Photographer plans challenge to help seriously ill baby

An award-winning photographer is embarking on a “crazy” winter mountain challenge to help a give a seriously ill baby an extra chance of life through the “most expensive drug in the world”. Rosie-Mae Walton, 19, and Wes Powell, 22, are facing their first Christmas with seven-month-old Marley not knowing how long he will live due to the rare genetic disorder he was diagnosed with two months ago. Marley has Type 1 Spinal Muscular Atrophy (SMA) - a condition similar to motor neurone disease (MND) which makes his muscles extremely weak, stops him moving his arms and legs, and causes breathing and numerous other life-limiting difficulties. Ms Walton and Mr Powell said he has very poor prognosis as 95% of babies with SMA do not live past 18 months without effective treatment. He is currently receiving the relatively new Nusinersen treatment, which is also called Spinraza, which finishes in six months’ time and there are no more UK treatment options if Marley has not improved by then. So, they are putting their hopes in a treatment available in the United States called Zolgensma, which they believe could dramatically prolong Marley’s life expectancy. But Zolgensma has been described as the “most expensive drug in the world” with the cost of treatment carrying a massive $2.1 million (£1.6 million) price tag for the one intravenous dose. After they began their desperate race to raise the funds to pay for the trip and the treatment ,news and sport photographer Joe Giddens said he saw Marley's plight and had to help. Mr Giddens, who works for PA Media - the national news agency for the UK and Ireland - is heading for England's highest peak, the 978m (3,209ft) high Scafell Pike, later this month - aiming to climb it as many times as possible in 24 hours while carrying a 50lb (23kg) pack. Ms Walton said Mr Giddens must be “crazy” as he has chosen just about the shortest day of the year, meaning he will have only eight hours of daylight, as well as the high probability of snow an
An award-winning photographer is embarking on a “crazy” winter mountain challenge to help a give a seriously ill baby an extra chance of life through the “most expensive drug in the world”. Rosie-Mae Walton, 19, and Wes Powell, 22, are facing their first Christmas with seven-month-old Marley not knowing how long he will live due to the rare genetic disorder he was diagnosed with two months ago. Marley has Type 1 Spinal Muscular Atrophy (SMA) - a condition similar to motor neurone disease (MND) which makes his muscles extremely weak, stops him moving his arms and legs, and causes breathing and numerous other life-limiting difficulties. Ms Walton and Mr Powell said he has very poor prognosis as 95% of babies with SMA do not live past 18 months without effective treatment. He is currently receiving the relatively new Nusinersen treatment, which is also called Spinraza, which finishes in six months’ time and there are no more UK treatment options if Marley has not improved by then. So, they are putting their hopes in a treatment available in the United States called Zolgensma, which they believe could dramatically prolong Marley’s life expectancy. But Zolgensma has been described as the “most expensive drug in the world” with the cost of treatment carrying a massive $2.1 million (£1.6 million) price tag for the one intravenous dose. After they began their desperate race to raise the funds to pay for the trip and the treatment ,news and sport photographer Joe Giddens said he saw Marley's plight and had to help. Mr Giddens, who works for PA Media - the national news agency for the UK and Ireland - is heading for England's highest peak, the 978m (3,209ft) high Scafell Pike, later this month - aiming to climb it as many times as possible in 24 hours while carrying a 50lb (23kg) pack. Ms Walton said Mr Giddens must be “crazy” as he has chosen just about the shortest day of the year, meaning he will have only eight hours of daylight, as well as the high probability of snow an
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DETAILS

Credit:
Press Association
Editorial #:
1289686940
Collection:
PA Media
Date created:
December 06, 2020
Upload date:
License type:
Rights-ready
Release info:
Not released. More information
Clip length:
00:04:56:12
Location:
United Kingdom
Mastered to:
MPEG-4 8-bit H.264 HD 1920x1080 25p
Source:
PA Media
Object name:
tvt_pa-92047