Dearest Emma,
Younger than springtime. Hope you stay that way…with flowers strewn in your path
Emma's Garden: Growing with Gaucher
A My Normal Project
Written & produced by Emma Rooney with original illustrations by Megan Rooney
Written & produced by Emma Rooney with original illustrations by Megan Rooney
A LOOK INSIDE THE DIGITAL STORY:
Shortly before my sixth birthday, warm pyjamas had to be sewn and a winter coat borrowed. My mom and I were taking a trip to New York City. We would be visiting a hospital. In New York City, for the first time in my life, I watched snow falling from the sky, saw dinosaurs at a museum, and went inside an MRI machine.
There were also lots of important doctors to see, and my mom held my hand the entire time. She tells me that at the time she felt very alone in the big hospital, not even knowing what questions to ask. But she did leave New York with a promise from the doctors that scientists were already working on treatments for my health problem.
I continued living my life, being active and pushing my limits. Sometimes my mom would call the doctor in a panic when the bone pain got stronger. It felt like a heart attack in my bones after too much highland dancing.
Then on December 3rd, 1996, at the age of thirteen, I started enzyme replacement therapy. As always, my mom was at my side for my first infusion at the hospital. I wasn’t afraid. We’d waited a long time for this opportunity. Once the medicine started flowing, I pictured it travelling throughout my body, making me well.
