Oscar and Seb Spink, twins from Lymm in Cheshire, smashed their fundraising target and raised £3,000 for Muscular Dystrophy UK after climbing the equivalent of the Stark Tower from the Avengers.
The 11-year-old boys live with facioscapulohumeral muscular dystrophy (FSHD), a progressive muscle-weakening condition. FSHD made this challenge very physically demanding for them as they climbed 130 flights of stairs over 30 days.
Their mum, Kerry Spink, said: "The boys are thrilled to have raised so much. It was tough and they ended up with sore backs and legs but they're incredibly proud of themselves - and so are we."
The 'Marvel mad' twins were elated to reach the £3,000 mark - their original target was £2,000. "Any Marvel fan will tell you how significant the number 3,000 is - the boys love everyone 3000 who supported them" Kerry says, referring to the popular line that Marvel character Morgan Stark says: "I love you 3000".
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," explains Kerry. "The Avengers are constantly facing challenges and we were discussing with the boys how living with FSHD is a bit like being a superhero."
Their favourite social media star, Fenix Lumiere, created a video in support of the boys' fundraiser: https://www.instagram.com/reel/CcvfX-xJ__w/?igshid=YmMyMTA2M2Y=
Oscar and Seb were diagnosed with FSHD in July 2019.
"Muscular Dystrophy UK was there for us from day one. We'd been informed by a letter arriving out of the blue - a devastating way to find out such a life-changing diagnosis. With no signposting from the NHS, we discovered Muscular Dystrophy UK online and called the helpline."
In 2020, Oscar and Seb completed the 2.6 challenge for Muscular Dystrophy UK which consisted of 26 laps of their garden. Since then, their muscles have weakened further due to FSHD. They now use power chairs to go to and from school independently, and the power chairs have opened up the world of powerchair football for them.
Oscar and Seb aim to raise £30,000 for the charity this year to help fund research and support others suffering from muscle weakening conditions.
Susanne Driffield, Regional Development Manager-North of England & East Midlands at Muscular Dystrophy UK, said: "Oscar and Seb have raised a phenomenal sum yet again, they are really superheroes in my eyes. We know how difficult it is to climb the stairs when you have FSHD, and this challenge really pushed the boys to their limit. The £3,000 will go a long way to fund further research into this condition - thank you."
Donate to Oscar and Seb's superhero step challenge today: https://www.justgiving.com/fundraising/superherostepchallenge