Alexandra Gardyne’s moving contribution to muscle charity fundraiser

Alexandra Gardyne has been painted by Damian Callan

Alexandra Gardyne, 32, who suffers from facioscapulohumeral muscular dystrophy (FSHD), is the subject of work by Damian Callan. His work will be shown as part of a one-off exhibition on Saturday at the Scottish National Portrait Gallery, in a fundraiser for Muscular Dystrophy UK, organised by Alexandra.

FSHD is a genetic muscle-wasting condition that causes muscles to weaken over time leading to increasing disability. It particularly affects the muscles of the limbs, shoulders and face.

Alexandra has a passion for art and is putting a creative spin on her journey with FSHD and the challenges she faces – which sees her reaching out to work with Damian Callan and other Scottish artists for this charity exhibition.

She said: “I was diagnosed aged 22, even though I had symptoms from toddlerhood. My walking is now significantly declining as is my overall physical strength.

“This 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.”

Damian said he found an extraordinary dignity and determination in the way Alexandra deals with the challenges of her condition. He said: “My subject is the moving figure and for many years I have worked on depicting the characteristic movements of sports figures and dancers, as well as those of my wife and children.

“Alexandra asked if I would consider working with her as a subject and model with a view to capturing the particular ways in which she moves and thus possibly offering an insight into the experience of living with FSHD.

“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 – trying to abstract her movements into their essential elements.

“I have attempted to produce positive and uplifting images that recognise an extraordinary dignity and determination in the way she deals with the challenges of this condition.”

The exhibition also features work by Ritchie Collins and other artists.

Ritchie said: “When I met Alexandra and she told me about the Muscular Dystrophy UK charity, I thought it was a great idea to host an evening of art in the magical setting of the portrait gallery. It’s an honour to be able to draw awareness and raise funds for such a great charity through my work.”

A gallery curator will take guests on a tour of the Modern Portrait exhibition room followed by a one-off auction.