IDENTICAL nine-year-old twins Oscar and Sebastian Spink, from Lymm, who both suffer from a rare muscle wasting condition, successfully completed 26 laps of their garden in a 2.6 challenge, raising over £4,500 for Muscular Dystrophy UK.
The boys who were diagnosed last summer with fascioscapulohumeral dystrophy (FSHD) – a rare , progressive muscle-wasting condition that slowly destroys muscle, making any physical movement difficult, were exhausted after the challenge but delighted at the amount of money raised towards research. There is currently no cure or treatment for the condition.
Three parents of their friends at Cherry Tree Primary in Lymm had been due to run the London Marathon this weekend to raise much-needed funds for Muscular Dystrophy UK. Since it has been postponed until October the boys took matters into their own hands to try to raise some money themselves, taking on the 2.6 challenge – a nationwide initiative to raise funds for charities that have lost income due to Covid-19.
The boys’ proud mum, Kerry Spink, said: “Thanks to every single person who has supported them. They are absoluteloy shattered now but have raised over £4.5k.
“Their initial target was to raise £260 and that was smashed in the first four hours as donations flooded into their appeal.
“Oscar and Sebastian are such gorgeous, cheeky little boys to know. We were heartbroken when we found out how debilitating this condition can become and we can already see how the simple act of moving around is becoming more and more difficult for them. Even ordinary things we take for granted, such as walking upstairs, can be a challenge, so trying to get round the garden 26 times is going to be tough! They never fail to amaze us with their resilience and determination to do as much as they can.”
Facioscapulohumeral dystrophy (FSHD) is a genetic muscle-wasting condition that primarily affects the face, shoulders and upper arms but can also cause weakness in the legs and rest of the body. It affects around 1 in 20,000 people and there are only around 2,500 people in the UK living with this condition.
Anyone who would like to contribute to the fund can still do so at https://www.justgiving.com/fundraising/oscarandseb
Thanks to every single person who has supported these 2 🧡🙌They are shattered now but raised over £4.5k for @MDUK_News. Super proud of them! #MusclesMatter #fshd pic.twitter.com/cKWJdHAp9c
— LadyBofT (@KerrySpink) April 26, 2020
