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My Normal - stories from kids with rare conditions

A Creative Project from The National Gaucher Foundation of Canada

My Normal project -
storytelling for rare disease community health

The "Emma's Garden: Growing with Gaucher" video grew out of a personal speech Emma bravely delivered at a National Gaucher Foundation of Canada patient meeting in 2007 about having Gaucher. The digital story follows Emma's journey from her initial diagnosis at age 3 — when there were no treatment options available for doctors to present to her very worried parents — up to age 13, when she embarked on treatment for her condition and a future of new possibilities for her health. Set to a lush global backdrop, the digital story showcases vivid original illustrations by Emma's younger sister, Megan, weaving together photographs, artwork, and home video footage from the Rooney family treasure chest. "Emma's Garden" reflects the importance of a loving and supportive family, healthy active lifestyle choices, and advancements in medical science as key ingredients to living well in spite of Gaucher.

Listen to an audio recording about the making of Emma's Garden:

"El Jardín de Emma: Creciendo con Gaucher" (Español)