One SMALL Step, Virtual Walk Page In honor Of Cassidie
Thank you for visiting my personal campaign page! PWS is very close to my heart as my daughter Cassidie has Prader-Willi syndrome (PWS) and I am helping to raise money for the Foundation for Prader-Willi Research. Without research there will never be a cure. Have you ever had to lock your refrigerator? or your cabinets? Have you ever had to listen to your child finish eating & literally beg you with tears in their eyes for more because they are still hungry? Have you ever felt a hunger pain after NOT eating all day? Well imagine if you lived with that hunger pain every day all day no matter how much food you did eat!! This is PRADER WILLI SYNDROME! When Cassidie was born all we knew was that she had "floppy baby syndrome" or low muscle tone in her entire body. Back then we had to force her to eat. She had no appetite what-so-ever. As she got older (about 3 yrs old) we noticed a huge jump in her appetite as well as her weight gain. At that point her Dr. said its ok for her to gain a little extra right now because as she learns to walk she will lose it & after all the forcing we had done to get her to eat it was a good thing she now wanted to eat..right?..WRONG! At the age of 5 on Jan 3, 2013 Cassidie was finally diagnosed with PWS. Something none of us had heard of, but something that fit her & her body to a T. From that moment on, our entire lives changed. Since that day almost 4 months ago we have managed to help Cassidie lose a total of 10lbs. & nearly 3 pants sizes!!!! The picture you see was taken in March of this year. If you can, imagine her a good bit heavier & us having no idea why she continued to gain no matter how much we altered her eating habits. When we got her diagnosis in Jan we knocked her down from 1800 cals a day to 1100. This & much much more exercise. Children (& adults ) with pws have a metabolism that is nearly nonexistent. So literally everything they put into their mouths is stored as excess fat with the exception of about 1000 to 1100 cals. It’s been a long road, but by the good graces of GOD we are making it. She is an amazing, sweet, loving little girl. I simply wish that one day she will be able to feel full after adequate meals. Along with the muscles & hunger issues comes, behavior issues, learning disabilities & many other factors into making this child & hundreds of other children’s lives a hard task. All proceeds from the One SMALL Step walks go to fund the Prader-Willi Syndrome Research Plan jointly created by FPWR and PWSAUSA. Learn more about PWS and this event at http://www.fpwr.org/. Please join me and donate now! "still hungry for a cure"