Bone to Stone
Maliha Rafi, Sami Nassr, Sarah Hallam and Sienna Edge
Mixed-media
Every year, instead of becoming more independent like normal kids would, I became more dependent,’ said Kathleen Degenhardt (Patient Voice, 2023). From the center of her body, the overgrowth of bone spread outwards, entrapping all caught in its path. As each limb seizes like stone, the lively motion of childhood becomes statuesque. Fibrodysplasia Ossificans Progressiva also known as Stone Man Syndrome, occurs in less than 1 in a million births. Those with this rare genetic syndrome cannot properly heal as the body will mistakenly replace muscles, tendons, and ligaments with bone. Most will grow to depend on external assistance for their activities of daily living.
To illustrate how this genetic condition holistically restricts aspects of a person’s life, we first established an artistic rendition of an afflicted skeleton. The external sheets of stone mimicked the excess growth caused by the condition while becoming platforms for hooks and plants. We chose to intertwine living vines between these hooks and around the bones to symbolize both restraint and excess, mirroring how the uncontrollable growth of living bone leads to immobility. Between the vines and spotted all over the body flowers of different varieties and meanings bloom. We chose white gypsophila, representing purity; pink and white daisy chrysanthemums, representing patience; and dark red roses, representing a deep desire.
The skeleton covered with vegetation appears akin to a stone statue lying within a park. It weathers through the seasons becoming ingrained with the soil as the days go by. We wanted to show a more serene side to Stone Man Syndrome while keeping the details that make it unique. For many, this will be the first time hearing of such a condition, so we wanted to present it for increased awareness. Despite their physical stagnation, the stories of those with Stone Man Syndrome moved us to create art in their honor.
Sources:
Foundations of Medicine Conference, Year One Collaborative Creative Piece, 2025
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I love this! Always wonderful to see people being ambitious and going for a larger project with reflective pieces! A sculpture like this (I think sculpture fits best for what you’ve made) is always interesting to see.
Part of the fun of having sculpture is that you can walk around it and get immediately striking different perspectives. Sad that I couldn’t see it in person! I can imagine that the way the vines and flowers spring from the skeleton would have had a wonderful pop out the front when viewed from the side.
The flower in the eye socket creates a lovely visual as well. I am always interested in “reclamation” as a function of art: using art and expression to claim back negative experiences as, if not positive, then “yours.” Using nature to represent the healing present in an experience of this condition is exactly that!
I would be interested to know how those specific flowers came to mean what you explained? Is there a personal connection or were you drawing on a larger set of meanings?
There’s something about this piece that just draws the eye and makes you not want to look away. I love the juxtaposition of the flowers, bursting with life, trying to grow through the empty spaces of the rigid skeleton.
Flowers (and plants in general) are conventionally associated with beauty and are usually considered to be harmless, and so I think it’s really interesting how you used them to symbolise such a distressing illness. The meanings of the specific flowers you chose are also really eye opening, especially when choosing to represent “deep desire” as an emotion faced by patients suffering with chronic illnesses.