Emma's Story



Emma's Garden: Growing with Gaucher grew out of a speech Emma Rooney delivered at a National Gaucher Foundation of Canada patient meeting, back in 2007, about living with type 1 Gaucher disease. 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 disease.



Production Team:
Written & Produced by Emma Rooney
Original Illustrations by Megan Rooney
Video Editor Alice Evensen
Medical Advisor Margaret Mackrell
Text Editor Micheila Storr
Social Media Consultant Brent MacKinnon
IT Support Specialist Bob Kyriakides
French Language Team
Translator Hélène Duquette
Narrator Francine Mayer


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



About Emma & Megan: sisters making art together

Emma Rooney, storyteller
Emma was born in beautiful Cape Town, South Africa. At age 3 she moved with her family to Rio de Janeiro, Brazil, and then a few years later to Toronto, Canada, where she spent many happy years growing up and continues to call home. 

Emma lives with type 1 Gaucher disease and she prepared her digital story, Emma's Garden, as a gift to her family and all the incredible people who have contributed to her growth and well-being. She hopes that telling her story, about living with a rare condition, will encourage more people to do the same. One story that always inspires Emma is Brundibar, by Tony Kushner and the late Maurice Sendak, a tale about the resilient spirit of children in difficult circumstances.  

Megan Rooney, artist
Megan is an artist living and working in London, England. She is an active member of the London art scene and recently co-founded, with her partner, Paul Kneale, the project space Library+, an art space in a former London library. When she’s not busy in the studio, Megan enjoys running along the Thames Path and taking care of her beloved houseplants, most especially the cacti. This story is very close to Megan’s heart, and she hopes that sharing this story will encourage others to face the challenges of their illness with the love and support of their families and medical community. The experience of collaborating on this project with her older sister Emma has been nothing short of wonderful, allowing the sisters to reminisce about the special memories of Emma’s journey. Megan’s all-time favourite children’s book is Where The Wild Things Are, brilliantly written and illustrated by the late Maurice Sendak.