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“Superhero” twins complete biggest physical challenge raising £3k for research into rare muscle wasting condition

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IDENTICAL eleven-year-old twins Oscar and Sebastian Spink, who both suffer from a rare muscle-wasting condition, have raised over £3,000 for Muscular Dystrophy UK, after embarking on their biggest ever physical challenge.

The boys from Lymm were diagnosed with fascioscapulohumeral dystrophy (FSHD) in 2019 – a rare, progressive muscle-wasting condition that slowly destroys muscle, making any physical movement difficult, and there is currently no cure or treatment for the condition.

Now Oscar & Seb have completed their biggest physical challenge yet with a 2,000-step challenge at their Lymm home!

Mum Kery Spink said: ” They are mad about Marvel and have been completing a massive task – to climb the equivalent of the Stark Tower from the Avengers films( we’ve given it a cheeky rename too 😉 ) through April – that’s 130 flights or 2000 steps!

“Their muscles have got much weaker in the past 12 months. They now have severe lordosis (curved spines) and shortening of their leg muscles, so climbing stairs is a real effort for them.

“They’re fundraising for Muscular Dystrophy UK to help those with the condition and fund research into treatments for FSHD. There is currently no way to treat or stop the progression of this cruel condition, so we know they are going to get even weaker as time goes on, relying on their wheelchairs full time and needing full-time support.

“Every little bit of support helps MDUK reach those with muscle-wasting conditions and the search for treatments.

“If you’d like to donate to their “Superhero step challenge” to show your support for our “April Avengers”, you’ll be their heroes! #superheroes #musclesmatter #superherosteps.”

The superheroes completed their challenge at the end of April.

Last year the twins helped raise £13,000 from a whacky hair day at their local school, while the year before they raised over £4,500 by completing 26 laps of their garden.

Donations can still be made online via https://www.justgiving.com/fundraising/superherostepchallenge

Twins latest Muscular Dystrophy fund-raiser takes total to over £13,000 during lockdown with Wacky Hair Day


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Experienced journalist for more than 40 years. Managing Director of magazine publishing group with three in-house titles and on-line daily newspaper for Warrington. Experienced writer, photographer, PR consultant and media expert having written for local, regional and national newspapers. Specialties: PR, media, social networking, photographer, networking, advertising, sales, media crisis management. Director Warrington Chamber of Commerce Patron Tim Parry Johnathan Ball Foundation for Peace. Trustee Warrington Disability Partnership. Former Chairman of Warrington Town FC.

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