Please take a moment to read below Linsey’s story about my beautiful Nephew Layne and what he faces in the future. Please help us to raise money for the Prader-Willi Foundation. Layne and so many others NEED your help. All proceeds from the One SMALL Step walk 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/.
“Layne looks like your average 9 month old. He has some delays but at this time they aren’t significant. We are currently in the “good” phase of Prader-Willi Syndrome. He eats well. He sleeps well. We can bring him anywhere. He hardly fusses or cries.
But it won’t be long before a feeling of insatiable hunger will overcome him. This feeling will never, ever go away. If you can only imagine what you feel like when you are “starving” and how that affects you. Imagine feeling like that every single second of every single day for the rest of your life?
Many also do not know the extent of the “hunger issue” people with Prader-Willi Syndrome face. It isn’t a matter of saying “no, you can’t have that” or teaching our children how to eat healthy. It’s a matter of hiding food, hiding things that smell good, hiding your pet food, locking your cupboards, locking your doors, watching them in grocery stores, and 24/7 supervision for the rest of their lives.
I realize and I am okay with the fact that Layne will probably never have a family of his own. I’m okay with the fact that he will need special education in school. I am okay with the fact that he may never drive a car. I’m okay with the fact that he won’t be the best athlete. I am okay with the fact that as parents we have to work a million times harder than many other parents do. But I am NOT okay with this “hunger issue” which of course leads to many many other issues. Layne is still so young and there IS time. There is time to find something that will make people with Prader-Willi Syndrome feel full or at least ease that hunger pain.”
We appreciate any and all donations, Thank you!! We love you all!!!