Father and daughter with type of Muscular Dystrophy from Surrey share their story
They say that their condition has made their bond a "lot stronger".
Ahead of Father's Day, a father and daughter from Shepperton in Surrey are sharing what it's like to live with a muscle-wasting condition.
Andy Chisolm, 62, and Dawn Wadeson, 31 both live with Facioscapulohumeral muscular dystrophy, and want to share their experiences to raise awareness of the charity Muscular Dystrophy UK.
They also say that coming to terms with the condition together has made their bond a "lot stronger".
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.
"I do think there's a lack of awareness."
Dawn explained how the condition has strengthened their relationship.
"Coming to terms with it at the same time has really helped us both process it together, grow together and be on the same journey and I think that's how our bond has become a lot stronger."
Andy was diagnosed with the condition in 2016 and Dawn was diagnosed a year later in 2017. It also affects two of Andy's siblings.
Dawn suggested that there's a lack of awareness about the condition.
"I do think there is a lack of awareness... we were lucky that dad's siblings had medical knowledge and having symptoms earlier in life, that helped us to understand what we could be in for.
"That's how we knew something about the disease but I think without that we would have been completely blindsided. When I went to the GP to talk about the condition, the GP didn't know anything about Muscular Dystrophy and this type either. So I do think there's a lack of awareness,"
Andy explained why he wanted to tell this story, particularly around Father's Day
"There's so much stigma attached to any disability or disabled person - and it's through Dawn that's made me, I believe, a better man.
"You feel ashamed in a lot of ways about having the condition... In this day and age, it's to try and get over that stigma of feeling ashamed and enjoying what you've actually got. through that process, I find that everyday is a lot happier because I can understand it, live with the wonderful things that I've got rather than think of the negative things that I've got as well."
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.
The family have 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. Andy also walked Dawn down the aisle at her wedding last year.
For more information or to help support their work, visit www.musculardystrophyuk.org or call our free helpline on 0800 652 6352 (Mon – Thurs 10am – 2pm).