An Edinburgh mum was diagnosed with a muscle-wasting disease in her 20s, after tripping over stairs and struggling to walk.
The 35-year-old art enthusiast, who lives with Facioscapulohumeral muscular dystrophy, will now be at the heart of a fundraising event at the Scottish Portrait Gallery.
Alexandra Gardyne, will be the subject of work created by Scottish artist Damian Callan, that captures the way that Alexandra moves, in the hope that it will offer an “insight into the experience of living with muscular dystrophy” whilst also raising funds for charity.
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The work will be shown as part of a one-off exhibition on the evening of 21 May and the event will take place at the Scottish Portrait Gallery to fundraise for Muscular Dystrophy UK.
Alexandra was diagnosed with Facioscapulohumeral muscular dystrophy when she was only 22.
She has a passion for art and is putting a creative spin on her journey with FSHD and the challenges she faces – this involved her reaching out to work with Damian Callan and other Scottish artists.
She said: “I was diagnosed aged 22 even though I had symptoms from toddler-hood. My walking is now significantly declining as is my overall physical strength.
“I was only diagnosed in my twenties when I could no longer run, kept tripping on the stairs and always feeling exhausted.
“The condition causes many issues like my eyelids not closing at night; sucking through a straw is difficult, and lifting my arms above my shoulders and head is impossible to do by myself. I will remain headstrong regardless of this and I find art a beautiful way to do this.
“I find it very hard to live with my condition but I am passionate about connecting with people and making things happen.
“I am trying to change the perceptions that others may have when they see someone with muscular dystrophy.
“This is a fantastic opportunity to raise awareness and educate about muscular dystrophy through art.
“I am delighted that so many artists have jumped on board. There will be a good range of pieces, with and without attachment to muscular dystrophy, so the mix is eclectic enough to suit people's style and pockets.
“I have always found art stimulating and exciting, and enjoyed galleries and local shows. I used to do a lot of arts and environmental workshops in my 20s. I love creating space for other people's creativity to flourish and be appreciated.”
The evening will begin at the Scottish National Portrait Gallery's Grand Hall.
Drinks will be available from the Heritage Portfolio Company while visitors can meet Alexandra and the attending artists.
Damian, a figurative artist whose work reflects that of Degas and Renoir, said he found an extraordinary determination in the way Alexandra deals with the challenges of her condition.
He said: “For many years I have worked on depicting the characteristic movements of sports figures and dancers.
“Alexandra asked if I would consider working with her with a view to capturing the particular ways in which she moves and thus possibly offering an insight into the experience of living with muscular dystrophy.
“Through a process of drawing her in the studio and photographing her walking in the Botanic Gardens, I began with a series of charcoal and pastel studies and developed these into paintings.
“I have attempted to produce positive and uplifting images that recognise an extraordinary dignity and determination in the way Alexandra deals with the challenges of this condition.”
FSHD is a genetic muscle-wasting condition that causes muscles to weaken and waste over time leading to increasing disability. It particularly affects the muscles of the limbs, shoulders and face.
Between 2,000 and 2,500 people in the UK have FSHD. Several generations of a family are often affected by the condition making it the third most common muscular dystrophy. It can be diagnosed at any age and can vary widely between individuals, even within the same family.
Julia Smith, senior manager, regional development at Muscular Dystrophy UK said: “Alexandra has put a lot of time and effort into this fundraiser and we are so grateful. We look forward to seeing photos from the event and expect it will be a fun and relaxed evening. Any funds raised will go towards Alexandra’s family fund to raise essential funds for research into Facioscapulohumeral muscular dystrophy.”
Alexandra added: “Muscular Dystrophy UK is a charity with a great level of experience and determination in their mission and the staff, and that always comes across. They have created many opportunities for people with these conditions.”
The venue is fully wheelchair accessible.
And those wishing to register for the event can do so here.
Those wishing to learn more about Alexandra and to view some of her artwork can do so through her Instagram account here.
