Prader-Willi Syndrome: It is such a complex disorder, that I could go on for pages about all of the medical complexities our children face, but the Hallmark of our community is HUNGER. Our kids endless and constant HUNGER.
In our country and in almost every culture that I can think of, everything revolves around food. Any Holiday, or get together, festival, carnival, picnic, party, food is the thing that brings us together! Amazing food. Whether it’s winter, spring, summer & fall, there is a food for every season.
Now could you imagine your world revolving around food but in a different sense? Always feeling like you are starving to death when you are not and only having 1/3 the metabolism as a typical peer so you only need 1/3 the food and calories to function. This is what our son lives with day in and day out, Prader-Willi Syndrome.
Our lives are filled with food, everywhere we go, yet Max can’t have most of it. Since his metabolism works so slowly, he is very prone to being overweight, MORBIDLY overweight. So, we live on a diet that will LITERALLY save his life. We keep away from sugar, simple carbs, soda, anything fun, it’s OUT! Max lives on protein, healthy fats, fruit, nuts, limited dairy, carbs coming from veggies… healthy carbs…with occasional special occasion treats. And we work to get very creative with our recipes to make things fun! Can you imagine going to all of these gatherings and watching everyone eat as they want, what they want, while you watch? And are STARVING to boot! Max sometimes forgets that he has just eaten!
When Max was diagnosed, one of the things we were told was "It's a feeling of hunger not like you skipped breakfast and it's lunch time and your body is hungry. It's more like you have been trapped in a desert for 7 days without food or water and your body is literally starving to death." If you have a child you cannot imagine the horrifying reality of what they will have to endure day in and day out, and there is NOTHING to control or stop this pain.
BUT THIS IS WHY WE FUNDRAISE IN HOPES OF A CURE THAT ONE DAY OUR LOVED ONES LIVING WITH PWS WILL BE ABLE TO "LIVE LIFE FULL."
WITHOUT AWARENESS THERE IS NO FUNDING.
WITHOUT FUNDING THERE IS NO RESEARCH.
WITHOUT RESEARCH THERE IS NO CURE.
WITHOUT A CURE THERE IS NO HOPE.
WE NEED TO WORK TOGETHER TO MAKE SURE THERE IS ALWAYS HOPE!
Pease find it in your heart to donate, every little bit counts.