New Digital Short Film for Kids with Rare Diseases

The National Gaucher Foundation of Canada announced the release of a short children’s film called Emma’s Garden: Growing with Gaucher on October 1the start of Gaucher Awareness Month.  The 10-minute animated digital film was written by patient advocate Emma Rooney about her experience as a child with Gaucher Disease beginning at age 3, when she was diagnosed, through age 13, when she began to receive treatment.  It’s told with first person narration in the voice of a child, along with illustrations and photos, and is translated into English, French, Spanish and Portugese.

The film is part of the Foundation’s My Normal project, which features a dedicated online gallery for sharing childhood stories of living with a rare condition. My Normal aims to break down the feeling of separation that children who live with rare diseases often face because they sense their stories are not for sharing, as they aren’t part of a normal childhood experience.  By establishing a dedicated space for stories from kids with rare conditions, the Foundation hopes to celebrate their voices while spreading awareness and hope.

The film was produced with funding through the international Patient Advocacy Leadership (PAL) Award, which the Foundation won in 2011.  Sponsored by Genzyme Corporation, the PAL Awards program seeks to spark innovation in lysosomal storage disorder awareness programs and patient support initiatives around the world.

To view the film and for more information about the My Normal project, visit

Gaucher is a rare inherited genetic disorder.

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