On behalf of our growing - changing - thriving, daughter, Cadence, we are excited to participate in another year of fundraising for Prader-Willi Syndrome (PWS) research! For those of you that may not be aware, Cadence was diagnosed with PWS, a disorder resulting from an abnormality of Chromosome 15, at 4 Weeks of age. The news came after an atypical birth, and a short stay in the NICU, due to hypotonia (weak muscles) and feeding difficulties. PWS is classified as a rare disease and occurs in approximately one out of every 15,000 births. At the time, this genetic condition was not detectable via prenatal testing, and we had no idea anything was "wrong" until this little girl came into the world.
Common characteristics of PWS include abnormal growth and body composition, insatiable hunger, low muscle tone, and intellectual disability, and these symptoms can manifest in different ways (or not manifest at all) over time. PWS is also recognized as the most common genetic cause of life-threatening childhood obesity. It is a spectrum disorder that comes with a laundry list of potentials and a lot of wait-and-see. It was completely unknown to our family until the day Cadence was diagnosed and, since that day, we have spent a lot of time educating ourselves and addressing PWS-related challenges. We have also tried to spend an equal amount of time supporting research and development efforts that can help minimize the effects of PWS on those who are afflicted.
Although Cadence's early years were overwhelming at times, we are very thankful for early detection, early intervention, and the multitude of therapies that were made available to us. These types of continuously-improved treatments are made possible through ongoing development efforts. With your help, and further funded research, we wholeheartedly believe it is possible to make the shift from treating the symptoms of PWS to preventing the symptoms of this multi-faceted disorder.
Cadence is now 5 1/2-years-old. She is active, creative, pensive, and hilarious! She loves Kindergarten, ballet, and horse riding. Her journey with PWS, in many ways, is just beginning, and it is still full of unknowns. However, we have hope in finding a cure and, most importantly, we have faith and belief in our daughter's strong will, demonstrated abilities, can-do attitude, and winning personality.
To learn more about Prader-Willi Syndrome, and support research and development in finding a cure, please visit: https://www.fpwr.org/
Thank you for all of your love and support!
Sam, Charlotte, Cadence, and Mason