Read NEW story from writer Elaine Benton in England.
Calling all kids to watch “Emma’s Garden” and then SHARE your own story of growing up with a rare condition.
(Click screen above to play.)
Emma’s Garden: Growing with Gaucher 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. WATCH 60 SECOND PREVIEW.
I starting writing stories and poems as soon as I could read and write, expressing myself on paper, which I now realise, was therapeutic in a sense.
- Gaucher and Parkinson’s advocate & writer Elaine Benton, UK
Read Elaine’s childhood story.