As Father’s Day approaches on Sunday 18 June, father-daughter duo, Andy Chisholm, 62, and Dawn Wadeson, 31, from Shepperton, Surrey, share an unbreakable bond as they both live with Facioscapulohumeral muscular dystrophy (FSHD), a muscle-wasting condition.
Living with the hereditary condition, which also affects two of Andy’s siblings, has brought the family closer and they are keen to share their experience to raise awareness of Muscular Dystrophy UK, the charity which funds research into treatments for rare, life-limiting muscle-wasting conditions and supports more than 110,000 adults and children across the UK affected by these conditions.
Andy, originally from Inverness, Scotland, was diagnosed with the condition in 2016 and Dawn was diagnosed a year later in 2017. The condition is caused by a genetic mutation that weakens the muscles in the face, shoulders, upper arms, and sometimes the lower legs. It is one of the most common forms of muscular dystrophy.
“We call having FSHD our superpower, and the positive thing about having the condition is certainly the fact that we can relate to each other in a way that not many others can – my dad is my hero and someone that I have always looked up to.
“We celebrate each other’s achievements which can be seemingly simple things like Dad walking to the end of his garden and back. But also, the big things like Dad being able to walk me down the aisle at my wedding in April 2022.
“We remind ourselves that we are lucky to have what we have in life. We talk a lot about our challenges, give each other advice based on the information we learn, and support each other on difficult days.”
Andy first noticed symptoms of the muscle-wasting condition in his mid-late 30s as his ability to play sports deteriorated. He then learned more about the condition through his siblings’ diagnoses of FSHD. In his 40s his mobility started to decrease, and he was finding everyday things more challenging, but despite the early signs he delayed his own diagnosis until he was in his mid-50s.
Growing up, Dawn was a keen dancer, but when she went to University in Chichester, she started to notice that she could no longer do a sit-up or raise her arms for a long time, which ultimately led to her dropping the dance component of her degree. In 2015 they decided together to get some answers and were referred to St George’s Hospital, Tooting.
“Dad and I were quite certain that we had FSHD, but we tried to ignore it to continue living life as it had been up until then.
“Dad felt relieved that his diagnosis was confirmed so that he could move forward in understanding how to live with this for the rest of his life. Likewise, when I was diagnosed. It brought him closer to his siblings, and us closer as a wider family, so we can help educate people about the condition.”
Andy now uses an electric scooter to get around, as moving is painful and he finds it very difficult to walk. Mobility equipment and home adaptations in their kitchen and bathroom, however, have opened up more independence for him, which he says has been empowering.
“MDUK has been excellent in providing support from explaining and helping me understand my disability benefit to helping me complete long and complicated forms. I would advise anyone who has been diagnosed with a muscle-wasting condition to get as much information and help through organisations like MDUK – I would have been lost without them.”
The family has also fundraised for MDUK, with Dawn and her partner, Liam, completing the 2017 Great South Run, and the Three Peaks Challenge in 2019. Liam also ran the 2020 virtual London Marathon as well as the in-person event in 2021, meaning they have raised a total of almost £7,000 for the charity.
For more information or to help support their work, please visit: musculardystrophyuk.org or call our free helpline on 0800 652 6352 (open Mon – Thurs 10am – 2pm).