Our B’nai Mitzvah is just around the corner and as part of our commitment, we are asked to do a Mitzvah, a good deed. We wanted to create something from our hearts that would remain even after our B’nai Mitzvah. We have decided to create Gifts for Gaucher. This will be a continued fundraiser through a partnership with The Gaucher Community Alliance, a Gaucher peer-to-peer patient organization that works with the Gaucher community to encourage patient families to help fellow patient families.
Gaucher is something that has personally touched our lives and will remain with us forever. In early 2011, Stella Rae, then 22 months old, was diagnosed with type 1 Gaucher disease. Towards the end of 2013, we attended a “Go for Gaucher” 5K Walk/Run in Atlanta. We returned home enthusiastic. Why? Because we met some of the most amazing people who helped us realize that life really does exist with Gaucher. We wanted to give others the same warm and inviting introduction to the rest of their lives.
Gifts for Gaucher will be a care package program designed to welcome newly diagnosed children and adults to the Gaucher community. Being diagnosed with Gaucher or any disease can be extremely scary and uneasy. We want to bring a little light to each person and family that is introduced to this new life-changing event. The packages will be personally created for each patient and consists of items like a Buzzy Medical Device (a vibrating device that helps to reduce the pain and fear of injections), a comfy blanket, coloring books, crossword puzzles, stickers, letters from other Gaucher patients and more!
Gaucher may be a part of Stella’s genetic makeup, but it doesn’t define her as an individual. Our family has embraced and supported every aspect of what she goes through and will continue to do so. We really hope that Gifts for Gaucher will be something that will bring a smile to newly diagnosed patients and their families! Thank you for supporting this cause to help newly diagnosed Gaucher families.
Stella’s parents, Rebecca and Bruce Cooperman