Thank you for visiting our fundraising page!
Our daugther Emelyn is 7 years old. She is funny, inquisitive, determined, bright and always working hard to do her best. From the outside, Emelyn often looks like a typical kid her age. What people dont usually know when they see her is that she has a rare and life threatening genetic condition called Prader Willi Syndrome.
Prader Willi Syndrome(PWS) is a rare life threatening genetic disorder caused by an absence of a portion of chromosome 15. Those with PWS have a slow metabolism, gain weight easily, low muscle tone and a lower than normal energy level among other challenges. One of the most debilitating symptom of PWS is that those with PWS have an insatiable appetite that begins usually between the ages of 2 and 8. There is no way to prevent this from happening, and there is no way to predict when it will happen. Because of the constant feeling of hunger, food seeking, stealing, hoarding, are all common issues with those with PWS. They cannot control themselves. They feel like they are starving and if left alone with food, they could and potentially would literally eat themselves to death.
This year we are VIRTUALLY taking one SMALL Step to help to raise funds for critical research to help eliminate the challenges of PWS. Due to how busy life has gotten lately, we didnt have the time to host an event this year, But we still wanted to represent Edmonton, Alberta by joining the Canadian Virtual Fundraising team. If you are planning to donate to a charity this year, please consisder this one. Your donations will make a difference and will help crutial research... research that will help kids like Emelyn live a life with less challenges and hardships.
Funds raised will be used to advance PWS research through the Foundation for Prader-Willi Research Canada. You can learn more about PWS and the research that is underway at http://www.fpwr.ca/research/.
Please join me and donate now!
Thank you on behalf of