A set of twin boys are taking on a mammoth challenge by climbing the equivalent of Iron Man's Stark Towers.
Oscar and Sebastian Spink, 11, were diagnosed with facioscapulohumeral muscular dystrophy (FSHD) in July 2019, a devastating incurable muscular degenerative disorder that makes physical movement difficult.
The Warrington pair have campaigned to raise money for the cause Muscular Dystrophy UK, a charity who were described as being “like a port in a storm” to the Spink family after the horrifying diagnosis.
Over the years, the family have raised over £28,000 for the charity, but by the end of the year they are hoping to reach £30,000, Cheshire Live reports.
The boys are obsessed with Marvel, and have decided to take on their latest physical challenge of climbing a height equivalent to Iron Man's Stark Tower which features in the Avengers films, a huge 2,000 steps.
They will be completing this task over the entire month of April. Yet this is not an easy feat for the boys, who are often in pain and struggle with movement.
Oscar and Seb are also both deaf, having worn hearing aids since they were six weeks old. This was an early sign of their infantile FSHD, but they were not officially diagnosed until they were nine-years-old.
Their family were helped by MDUK come to terms with the diagnosis and offered them essential information about the disorder. To show their thanks, the boys have taken part in fundraising events to fund more research and help other families like themselves.
In 2020, they walked 26 laps around their garden during lockdown, raising an incredible £6,000. They have also hosted comedy bingo nights, online balloon races, and treasure hunts around their Cheshire village. Their latest physical challenge may be their last before their mobility is reduced even further.
The boys currently use power wheelchairs to go to school, and even enjoy playing powerchair football. Although they can move around without them in the home, the effort is exhausting for the twins.
Mum, Kerry Spink, said: “Walking up and down stairs is something most people take for granted but for Oscar and Seb, the FSHD makes it incredibly tiring – I suspect it’s a bit like us trying to do it with sandbags strapped to our arms and legs.”
Kerry told Cheshire Live in a previous interview: “They do get in a lot of pain, it is incredibly fatiguing. Them trying to get upstairs is like me trying to run a 5K. Just doing daily bits of living, like sitting down and standing up, takes up a lot of muscle power.”
She explained that their latest challenge is inspired by a franchise close to their hearts: “The boys are mad about Marvel and just like the Avengers are constantly facing challenges, we were discussing with the boys how living with FSHD is a bit like being a superhero.
“The boys wanted to set themselves a superhero challenge and they decided that getting to the top of the Avengers tower (we call it the ‘Spink Tower’) would be a good target. They’ve always wanted to be part of the Avengers team!”
Susanne Driffield, Regional Development Manager-North of England & East Midlands at Muscular Dystrophy UK, said: “Oscar and Seb are real superheroes taking on an extraordinary challenge to climb the equivalent of the Stark Tower over 30 days.
"Most people take climbing the stairs for granted but FSHD makes just a few steps exhausting. I’m so grateful to the Spink family for their fantastic fundraising for Muscular Dystrophy UK, which has enabled us to fund research into helping develop treatments for those living with muscle-wasting conditions.”
To donate to their superhero challenge, which they are completing over the month of April, donate here.
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