Oscar and Sebastian Spink are identical twins from Lymm in Cheshire where they live with older sister Scarlett, mum and dad Kerry and Grant and their three dogs Pip, Bert and Ernie.

Having experienced hip pain and poor weight gain, as well as having a lack of facial movements and protruding shoulder blades from an early age, it was obvious that the boys had something that needed investigating further and so began an 18-month long quest to reach a diagnosis. That diagnosis eventually came following a genetic blood test and the twins were officially diagnosed at the age of 8 in July 2019 with Facioscapulohumeral muscular dystrophy (FSHD).

Says mum Kerry,

“The tests results arrived out of the blue from the hospital in the post which was obviously a huge shock. We were utterly devastated when we read up about muscular dystrophy on the MDUK website and so understood the serious implications of the diagnosis”

Having such early-onset FSHD meant the boys both needed to start using electric powerchairs to get around when they were 10 and as the boys have now just reached their teens, they are still coming to terms with how their condition will progress and affect them as they grow up. They always try to keep a positive outlook and with their wider family, take on the challenge to help fund research into the condition by running a Family Fund.

They designed their own superhero step challenge – climbing the equivalent height of the Avengers tower from the Marvel universe over a month, have held regular bingo, auction and coffee morning events, as well as inspiring friends and family to run the London Marathon and Great North Run.

Both Oscar and Sebastian have developed a passion for powerchair football and are making their debut in the national WFA Championship league with their Manchester City teammates later this year. In addition, they’re both keen chess players and love to play regularly on their games consoles, listing Fortnite as their favourite game.

Kerry says,

“The boys are receiving regular specialist physiotherapy and are receive care from Alder Hey hospital in Liverpool. When they were diagnosed, we found MDUK online and the charity have been absolute lifesavers for us with the information we have been able to obtain. We have been able to meet other families through the brilliant family fund weekend and access social media platforms for peer support through the charity and these have been such a comfort in the darkest times. We are determined to continue to raise funds to help pay for ongoing research”.