Our very own Princess Emmy is 10 years old and is in 5th grade. She has difficulties getting around on her own and usually relies on holding our hands to stay upright and forward moving. She struggles with basic tasks like getting dressed, using silverware and writing utensils, walking up and down stairs, and even sitting upright for long periods of time. Because A-T attacks the entire body, everything requiring the use of muscle is affected. From eye tracking to swallowing, standing up to sitting still; Emmy has to consciously put forth effort to control her body in ways that the average person rarely thinks twice about.

Emmy is very soft-spoken but equally big-hearted! She is our donut-loving, Barbie-playing, girly-girl who loves to play with friends, go shopping, and travel to visit family. She’s much like other girls her age but she’s stuck in a body that doesn’t work all that well.  A-T is a complex, multi-faceted disease and, unfortunately, there is still a lot to be learned about it. Due to its rarity, there isn’t much government funding being allocated to study potential cures. We have, however, been working closely with the A-T Children’s Project for seven years now - they are one of the very few non-profit organizations in the world working hard to unite affected families, find life-improving therapies, and fund the much-needed medical research to find a cure specifically for ataxia-telangiectasia. In addition to coordinating and supporting biomedical research and scientific conferences, the A-T Children’s Project also funds a clinical center for A-T patients at Johns Hopkins Hospital in Baltimore.