THREE friends from Lymm – Jon Sheehy, Stuart James and Thanh Cawley – completed the London Marathon in aid of Muscular Dystrophy UK, raising over £8,000 in support of local twin boys with a rare form of the condition.
Their charitable campaign saw many months of training and several fundraising events. The trio of runners ran in support of local twin boys, Oscar and Seb Spink, who were diagnosed at the age of 8 in July 2019 with Facioscapulohumeral muscular dystrophy (FSHD).
Muscular Dystrophy UK is the charity for the 110,000 children and adults living with muscle-wasting conditions in the UK. There’s currently no cure, and in many cases, it limits lives. MDUK do vital work in funding pioneering research into treatments and cures as well as providing vital information, advice, resources and support for individuals and families living with these conditions.
Many locals will know the Spink family and have seen the boys navigating the streets of Lymm in their wheelchairs, often on their way to and from Lymm High School. They are also well known in the Powerchair football league in the Man City wheelchair football team.
For the boys and their family, everyday life presents enormous challenge. Despite the courage, tenacity and good humour they all display, the reality of life with Muscular Dystrophy involves specialist equipment, tests and appointments with spinal disorder, neuromuscular, orthopaedic, cardiovascular and audiology specialists. And then there is school SEND meetings, speech and language therapy, occupational therapy, hydrotherapy and daily physiotherapy.
The boys miss a lot of school time and can’t join in the majority of fun activities that their school friends can. Despite that, they work hard and are currently on course to take the same number of GCSEs as everyone else. Seb is a keen scientist, hoping to do something with chemistry and the natural world. Oscar loves design tech and wants to help create a more accessible world for wheelchair users.
The boys are kind and empathetic young men, proud to be disabled and advocate for those with muscle wasting conditions like themselves who endure chronic fatigue and daily pain. There is currently no treatment available to halt the progression of their condition, which makes fundraising for research on FSHD so important.
Mum to the boys, Kerry Spink, said of the recent marathon fundraising: “We’re so incredibly grateful when our amazing friends and family tackle challenges to raise funds for MDUK. Stuart, Jon and Thanh, all smashed the London Marathon with amazing times and made their muscles matter. I know that when they hit that wall with tired muscles, they pushed through remembering that the boys legs feel like that every day.”
A huge thank you is extended by the three runners to the many local people and businesses who supported their fundraising events.
One final fundraising competition remains open to the public with a fantastic prize draw of bridal accessories. If you know of a bride-to-be, please direct them to the competition offered by Thanh at: https://www.facebook.com/daintytailor
To read the team’s story or make a donation to Muscular Dystrophy UK before the campaign page closes end of May, please visit https://www.justgiving.com/page/js2london24. All donations, big or small, are greatly appreciated and will go towards critical research work and important support and resources.
