Victor's Victorious 29th Birthday Fundraiser
We are almost there!!! Vicks birthday is November 22nd and we feel so blessed that we have such great friends and family who have supported us these last 29 years. Thanks to all of you who have contributed or sat with us during dark days. Words cannot express how much we appreciate all of you.
UPDATE: We are now are at $4,400! We are so blessed and thankful to all of you. Our goal is $5,800 by Victors birthday which is November 22nd! We are almost there. Why 58??? Because we would love to double the average life span of our children and adults who have Prader-Willi Syndrome. Thanks again to everyone!!
This November, my son Victor, who has PWS turns 29. Did you know? 29 years is the average lifespan of an individual with Prader-Willi Syndrome. As you can imagine, this statistic fills us with anxiety, fear, and sadness.
Victor’s Journey: Victor was born November 22nd, 9 weeks early. I didn’t get to hold him for a week as he was taken to the NICU where he spent the first 5 weeks. We knew something was seriously wrong, but did not recieve a diagnosis until two years later, (on the day I gave birth to my daughter) when we learned that our son had a rare disease called Prader-Willi Syndrome.
We had also learned that Victor would experience hyperphagia—an insatiable hunger and desire to food seek, an inability to feel full. This terrified us! A social worker connected me with Prader-Willi Syndrome Association. They calmed my fears, armed me with information, and filled me with so much hope. I have been an active member and volunteer for of both the Arizona Chapter and PWSA | USA since that day.
Without the resources, expertise, and support of PWSA | USA, there would be no advocacy efforts in place, no tools to educate families, no hope to help us on our journey. This year, we are celebrating with great fanfare all of Victor's accomplishments. With your support of this Fundraiser, you can help to ensure that our family and thousands of others across the U.S. can have the life-saving support and hope that every PWS family needs! Thank You!
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