We are Prader-Willi Syndrome Families United!!!!
Like many of you out there, all of our stories started with what we thought was the worst day ever, the diagnosis of Prader-Willi syndrome! How could a disease like this even exist? And how could something so strange, be something we had never heard of? Despite this difficult diagnosis, many positives changes have happened in our lives because of it, including informative educational opportunities, research grants that give us hope for our children’s future, and mostly…lasting friendships.
My daughter Madison was diagnosed in 2012 at the age of 3 months. After making the call to PWSA, my husband went on the Yahoo open forum. We both joined in on conversations for new parents and heard what other people were going through. But one day, I received an email from a woman who I would inevitably be forever indebted to. Her name was Amy and her son, Aedan, also had PWS. Amy told me about other families in CT who had children with PWS and we decided to meet. Soon after that conversation we met at an old wooden park in North Haven. Needless to say, that was the best and scariest day of my life (besides our diagnosis day). It was scary because we were about to meet other kids with PWS, and everything we had read had been so scary. But it was also the best day because we met so many incredible moms, dads, and kids who were just like us. To my amazement, the kids I met were ‘typical’ kids… running around, playing, etc. I left that park with so much hope for the future.
Amy and I began our friendship that day. I learned all about her son, Aedan. Aedan did not receive his diagnosis until he was 9 months old. Many of his initial genetic tests had come back negative for PWS, but Amy was persistent and after many months and many tests, Aedan was officially diagnosed with PWS. That next year, Amy started the annual Walk and Roll for PWS.
I came along during year two. Like the first annual Walk and Roll for PWS, the second year was a huge success. We walked for PWSA USA’s “On the Move” campaign, where the proceeds went to PWSA USA to help families with PWS.
In 2013, we welcomed another new family to our group…the Geraci’s. Amy had called me about a new family that had just been diagnosed and the baby was still at Yale in the NICU. I told Amy that I was happy to meet the new mommy, Christine, and talk with her. I still remember coming down the stairs at Yale and seeing a scared mom sitting there. I couldn’t help but wonder if that was how I looked to Amy when I met her. Christine and I chatted for a bit and I learned that Mackenzie, now 4 weeks old, had been diagnosed a few days earlier. I showed her pictures of Madison, the things she was doing, and even sent her a video of Maddie riding her electronic car around the yard… all things we never thought were possible.
From that day on, the three of us have joined forces to tackle PWS in every way we thought possible. Together we have organized two more Walk and Rolls for PWS events. In 2014, Christine founded ‘The Mac Pact’, a non-profit organization that helps supports families struggling with supporting a family member with PWS. The Mac Pact has held vineyard fundraisers and held the first annual Mac Pact 5K in October of 2015. The Mac Pact has helped families with travel arrangements, paying medical bills, paying utility bills and much more.
In 2015, we started a new non-profit in Connecticut to help families with PWS, an idea sparked by Amy’s grandmother, shortly after Aedan’s diagnosis, but one that never could have happened without our bond created through this difficult diagnosis. Our goal is to support each other, educate our families and the greater community, and bring awareness to this syndrome that brought us all together.
We wanted our families to have a say where the money they have helped to raise would be used. Prader-Willi Syndrome Families United was approved as a national 501(c)3 Non Profit Organization by the IRS the day of our 5th annual Walk and Roll for PWS!!!! We are excited to begin this new chapter and are looking forward to what the future holds!!!!