Our dear daughter, Rachel, has Prader-Willi Syndrome (PWS) and we are taking one SMALL Step to raise funds for critical research to help eliminate the challenges that she faces every day.
Rachel was born on September 22, 2009 to an ecstatic mom, dad and big sister, Abby. Rachel was a beautiful, perfect and quiet little baby. It was only the next morning that red flag began to arise that something was not quite right. She had not been eating nor did she even cry much more than a whimper. That was when the doctors began taking blood tests, ultrasounds, and scans of her tiny little body. Later that day Rachel was transferred to the Montreal Children’s hospital for more tests.
…fast forward 5 months…
A blood test revealed that Rachel tested positive for Prader-Willi Syndrome (PWS). Within hours we were in contact with the Johnson’s,-Keegan and Tanya- whose son Dante is living with PWS. Tanya understood my feelings at the time, which are indescribable! I needed to do something, but what? I couldn’t change Rachel’s diagnosis no matter how hard I tried. Also, how was I going to tell people-friends, family, community, and our parents? So I decided to open a personal fundraising page on the FPWR Canada website and write our journey from September 22, 2009 until March 22, 2010 and email it to everyone we knew. Within 5 days we raised $5000 and as importantly we raised awareness around PWS. Later that year-the first Sunday in August- we had our first walkathon. Since then we have led 7 more One Small Step Walkathons raising over $40,000.
To all of us Rachel is a fun loving kid, who enjoys talking, exploring and playing-like all 8 year old girls. What we don't see is her struggle to constantly need to eat to satisfy her hunger, which is impossible (as of right now). That's why we need your help. Research is advancing, but we need funds for more studies and trials. G-d willing when Rachel is a teenager or a young adult she will be able to benefit from this research and live an independent life full!
This year we invite you to donate and participate in our 9th annual One Small Step Walkathon for Rachel and others faced with similar challenges. Our walk will start at 10am on Sunday, August 5th in Hampstead Park (corner of Fleet and QueenMary).