Gwyn’s daughter Ellie was the first baby of the New Year 2012 in Spartanburg County, South Carolina. She stayed in the NICU for 30 days, and was diagnosed with Prader-Willi syndrome (deletion) at eight weeks of age. In honor of PWS Awareness Month, Gwyn has been sharing a chronicle of her family’s experience with PWS on her blog, Trusting Our Journey.
“After Ellie was born, I remember feeling the need to do something for her….do something about her diagnosis. I knew I couldn’t take away PWS from her, but I knew I could help her have the best life possible.” Gwyn, and her husband David, began researching ways to get involved with other families living with Prader-Willi syndrome and quickly connected with FPWR. Gwyn shares, “Immediately I found FPWR and One SMALL Step, and Susan and I chatted right away! I got off the phone super pumped to host my first walk in November 2012! A week later we attended our first FPWR research conference in Philadelphia….to say we had an exciting two weeks was an understatement. We were filled with hope, joy, and felt empowered for the first time since Ellie’s diagnosis.”
Gwyn jumped head first into volunteering for FPWR in addition to hosting an annual One Small Step event in her hometown of Spartanburg. Thanks to the incredible commitment of fundraisers like Gwyn, FPWR grew exponentially and Gwyn was recruited to join the Foundation’s Development team in 2014. “My mom always told me, love what you do, and feel that it matters. Wow, little did I know that having my daughter would help me do just that.”
As a part-time staff member, Gwyn helps support FPWR fundraising efforts and donor stewardship programs. As a veteran fundraiser for FPWR, Gwyn enjoys providing advice and real world experience to help support and coach hosts through the event planning and execution process. When asked what advice she gives most, Gwyn recalls, “Don’t compare your event to other events – friendly competition is wonderful and helpful, but at the end of the day, your event needs to be yours. People will appreciate that, and you will get tons more enjoyment and fulfillment out of it….Have fun with it and showcase your precious, brave, wonderful PWS community! Also, shamelessly borrow, steal and share other families or hosts great ideas…we are all in this together and supporting one another!”
Gwyn is an integral part of the FPWR national Development team not only because she has an intimate knowledge of the experience of raising a child with PWS, but also a tremendous heart and deep sense of gratitude. When asked if she had any acknowledgement she would like shared in this feature, she responded, “David and I have been blown away by the outpouring of love and support for our family. Our family has held us up when we felt like falling, our friends have loved us through it all, and our PWS community has and will continue to fight alongside us tirelessly. Thank you doesn’t seem adequate enough, but we are indebted to anyone that has listened to our story, donated to the cause, and supported us on this journey. Together, we will eliminate the challenges of Prader-Willi syndrome through the advancement of research. Together our children and loved ones will soon, live life full and each one of them will find their passion and niche in this world with our love and support.”