Mommy's Story Hour Campus Advocacy Project

New program: Mommy's Story Hour campus advocacy project

Being a rare disease patient in school, educational inequality is not rarely seen, which often leads to misunderstanding, low learning performance, or even worse, social exclusion. As we envisage a friendlier learning environment for rare disease children, public advocacy of their rights has always been on top of our agenda. New programs were developed every year to eliminate educational inequality derived from rare disease patients’ appearance or special needs. One aspect to achieve this is to disseminate the notion of and knowledge about rare diseases. The first attempt was to give out “Liàng Liàng’s story game” VCD to schools, which contains a cartoon about a child with rare disease and an educational computer game. Next came the “Hand Puppet Show” touring around elementary schools in northern Taiwan by structured plots and conversations. Later, “Giant Liàng Liàng Doll” played by a professional group was also introduced to touring in Taiwan. 

 “The Mommy’s Story Hour campus advocacy project” was a new attempt commenced in 2008 to teach younger children about rare disease and how to get along with rare disease patients. For the first time, instead of staff, patients and their families were recruited and trained not only to play the leading roles --the Storytelling Mommies but also to collectively construct story lines. Targeting low-graders in primary schools and young children in kindergartens, stories were presented in an ease and funny way so that young children could understand the contents easily. 

Costumed like a character in a tale, with a tailored giant storybook, Mommies start the story. The lively voice of Mommy and vivid characters in the book attract everyone’s attention and the whole class listened quietly. By storytelling and funny trivia quizzes played afterwards, the hard knowledge and symptoms of rare diseases have been transformed to interesting and inspirational stories, easy for children to understand. In particular, playing games provide chances for children to practice how to interact with or care about other children with special needs. The whole process encourages interactions between speaker and the little audiences, which makes this project distinguishable from the earlier ones. 

Since last November, this “Mommy’s Story Hour campus advocacy project” has been toured 15 schools and kindergartens in Taiwan. So far, there is a series of 6 stories containing 5 categories of rare diseases. It includes Prader-Willi Syndrome, Metabolic Disorders, Hereditary Epidermolysis Bullosa, Osteogenesis Imperfecta, and Muscular Dystrophy, and a story of Get to Know Rare Diseases. Schools are welcome to contact us for a Mommy’s Hour stop, especially for those with rare disease children in it.