Our son, Troy, was born in June of last year. As many of you know, Troy was very weak when he was born and was immediately taken to the NICU. After several weeks and many tests, Troy was diagnosed with Prader Willi Syndrome. Although Prader Willi was completely unknown to us at the time (as it may be to you), through this diagnosis a whole new world has been opened up to our family and we have learned so much. We would like to introduce you to this rare condition and the opportunities we have to make a difference for these children. Prader Willi is often known as “the hunger disease”, as one of the stages is marked by children having an insatiable appetite since they lack the normal cues we all have to “feel full.” You can find out more information about the syndrome at www.fpwr.org.
Prader Willi presents a wide spectrum of challenges (physical, intellectual and emotional) that these children will face in their lifetime, yet there is great hope right around the corner. Together, we can make a real difference for many children and completely change the course of their lives for the better. Much research and many new treatments are on the verge of transforming these children’s future. Although we personally may not be able to research the genetics behind Prader Willi or discover a cure, we definitely have a role to play. Due to its rarity, Prader Willi does not receive the publicity that leads to the funding needed for research and development. That is the reason we are asking for your help. We will be participaing in the One Small Step Walk May 19th from 1 to 3pm. We would love for you to walk with us and our sweet Troy as well as consider donating to his fundraising page.