Emma lives with Facioscapulohumeral muscular dystrophy (FSHD) and is taking on these two challenges in memory of her Nana, Veronica, who lived with the same rare condition and sadly died in November 2024.
Emma is fundraising for Muscular Dystrophy UK, the leading charity for more than 110,000 adults and children in the UK living with one of over 60 muscle wasting and weakening conditions, and has already raised over £1,500.
Emma, who is currently in her final year at Stranmillis University College studying Early Childhood Studies, was diagnosed with FSHD, a rare genetic condition that causes progressive muscle weakness, at the age of seven.
“My Nana also had FSHD,” explains Emma. “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. We were very close and I’m taking on these challenges in her memory and to help fund vital research and support those living with this condition.”
While the symptoms and severity of FSHD vary, for Emma it is fatigue, walking and pain in her arms that she struggles 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,” said Emma. “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. 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!”
Emma found out about the Belfast Abseil while searching for fundraising ideas on Muscular Dystrophy UK’s website. Keen to raise money to help the charity fund research into treatments, she also wants to increase awareness of FSHD and other muscle wasting conditions in memory of her Nana.
“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.
“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.”
Jodie Whitham, Community Fundraising Manager at Muscular Dystrophy UK said: “We’re so grateful to Emma for taking on not one but two challenges for us this month! The money she has raised in her nana’s memory will make a real difference and help us to continue to fund research to improve understanding of muscle wasting conditions, provide help and advice to those who need it, and accelerate new treatments.”
Support Emma’s fundraising at https://www.justgiving.com/page/emma-adair-1
For more information about the upcoming Belfast Abseils on 18 May, 14 September and 12 October, visit www.musculardystrophyuk.org/get-involved/events/
A free Information Day for adults and parents of children living with a muscle wasting condition is taking place on 4 June at Island Hall, Lagan Valley Island, Lisburn. Speakers will cover a range of topics including research updates, physiotherapy and personal experience of living with a condition, focusing on support and services available in Northern Ireland. Sign up at www.musculardystrophyuk.org/northern-ireland-information-day
Find out more about Muscular Dystrophy UK at www.musculardystrophyuk.org