Rare Collections

My Normal: Gaucher Kids

The first story contributions to the My Normal project came from the Gaucher disease community, relating perspectives of children and childhood. These individual contributions offer simple ideas on different approaches one may take in sharing a story.

In The Way I See It, Cody from Canada talks openly about what it’s like to be a kid with Gaucher. His mom Anita explains how, "Cody doesn’t really like to write, especially about his feelings. So we decided to set it up like an interview instead." Anita was able to share her own written reflection on dealing with Cody's initial diagnosis. Her sister Michelle, Cody's aunt, composed a beautiful poem entitled He is about her nephew. Each member of the family offered their unique perspective on the same disease, in a way that also felt right to them.

We later received three black and white photo contributions from Wayne Rosenfield in the United States. Wayne selected his most favorite family photos as a way to express, "a time before we could even conceive of something like a life-changing disorder". At the surface the photos appear to have nothing to do with his disease but they speak volumes about what it means to have a childhood before a diagnosis. While we may live with a disease, we aren't our disease and a rare disease story don't always need to focus on our condition.

It was an obvious choice for Elaine Benton to write us a story about her British childhood with Gaucher disease. This international blogger, author and Huffington Post UK journalist reflects about the role of writing in her life, "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".
In the United States, The National Gaucher Foundation, Inc. has made the Emily's Journey with Gaucher Disease animations to engage children in learning about Gaucher. It's worth noting how the pharmaceutical industry also uses stories as a tool for patient resources. Two such examples are the children's storybooks David Explores Gaucher Disease from Shire Human Genetic Therapies, Inc. and Gigi and Type 1 Gaucher Disease from Genzyme Corporation, both staring young Gaucher patients as their main characters.

Getting Started on Your Story
When deciding as an individual how we may go about creating our own story, it's evident from these examples that we should consider how we naturally like to express ourselves. Sharing a story needn't be a painful process if we're doing something we love to do. A good place to start might be with your own treasure box of family photos. You may find stories collecting dust waiting to be told. Also it's good to keep in mind that just because it's your story to tell, doesn't always mean you'll remember all the details, especially if delving back in time. Researching your story could start at the kitchen table with an informal chat. You could also consider setting-up an interview with a member of your family or have someone ask you questions to help you uncover your story. When you start on this journey, you may very well be opening up a space for those around you to become storytellers too, sharing insights from their own point of view. The makings of a storytelling circle begins...
  • Visit our Story Making page for more ideas about getting started on your own story and the Links page for other Rare Disease Story Galleries & Collections.