On Sunday 6 April, Emma Adair abseiled 120ft down the Europa Hotel in Belfast. But she’s not stopping there as she also aims to complete 1,500 squats during the month of April. Emma lives with Facioscapulohumeral muscular dystrophy (FSHD) and is taking on these challenges in memory of her Nana who lived with the same rare condition. Emma tells us why she wants to fundraise and increase awareness.
“I think she’d be proud of me for trying to make a difference”: taking on two challenges in memory of Nana
I was seven when I was diagnosed with Facioscapulohumeral muscular dystrophy (FSHD). My Nana also had FSHD so when my mum started noticing early signs, like me walking differently, tripping over a lot, and having a slightly wonky smile, she took me to get tested.
“Nana and I used to call it our ‘superpower’, something special that we shared. “
My nana was the most lovely, kind-hearted person. She was very arty and loved painting, cooking and knitting. I remember us always playing in the back garden where she taught me to skip and hula hoop. And she threw the best Christmas night parties! I was her eldest grandchild, and we were extremely close – I know that she’d be proud of me now for trying to make a difference.
The symptoms and severity of FSHD vary, but for me, it is fatigue, walking and pain in my arms that I struggle with most. I’m still mobile but get tired easily and can find it hard to keep up with my friends if we are walking somewhere. I’m often hesitant about going to new places and always try to avoid hills.
I needed extra help at school, mainly because my arms got so tired and sore. I was lucky that I had a great Special Educational Needs Coordinator who really helped me, especially when it came to applying for university, and I’m now in my final year at Stranmillis University College studying Early Childhood Studies.
Tiredness is the biggest factor for me, and it is getting worse, as is my walking.
“But I’m determined to make the most of life. I started going to the gym a couple of years ago and really enjoy it now. It’s tiring but I’m seeing results and hope that it will help to maintain some of my muscle strength.”
The idea for my 1,500 squat challenge came from the gym as I saw someone there doing a similar thing. They were doing 10 squats a day, so I thought I’d try to push myself and do 1,500 over the month, so 50 per day. I don’t do them all at once though!
I found out about the Belfast Abseil while searching for fundraising ideas on MDUK’s website.
“I knew I wanted to raise money but wasn’t sure what to do and then I spotted the abseil. I’m doing these challenges in memory of Nana and to support others living with a condition like ours.”
There’s currently no cure for FSHD or any other muscle wasting condition, and for many it leads to significant mobility loss. I knew I wanted to do some fundraising to help so that more research can be done. But I also want to get people talking and raise awareness. When I talk about my condition, hardly anyone has heard of it, and I’d like to change that.
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By supporting Emma’s efforts, you’ll be contributing to crucial research and support services for individuals living with muscle wasting conditions.
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