In receiving a diagnosis of Prader-Willi syndrome, we as parents are at once overwhelmed by the enormous number of symptoms and the levels of severity possible within each one. Virtually no system within the body and mind is left untouched when this tiny amount of genetic material is found to be missing, duplicated, or altered. Faced with a challenge of this magnitude, we are often left absolutely breathless. We are simply random parents given no warning, no chance to prepare, and no choice. How can we possibly handle all of our children’s issues that come from a force with such penetrating power? What skills and strengths could possibly be sufficient to enable us to guide our children through waters this troubled?
History has shown us again and again that the only force known to effect real change, even in the most desperate of circumstances, is one of which we all have an unlimited supply. That force is love, and that love is most powerful when it comes to fighting perceived threats to the lives of our children. It was this force that caused us to form The Foundation for Prader-Willi Research (FPWR).
It has been said that if there was ever a good time to have PWS, it is now. Although there is an obvious absurdity to this thought, there is truth in it. Research is being done throughout the world on obesity and behaviors related to hunger signaling, the very issues that this diagnosis presents. Researchers are working frantically to develop therapies in hopes of becoming the first to develop effective treatments for the general population. Our goal is to sponsor projects that focus that very research on PWS and to increase the likelihood that treatments will be developed for our children sooner rather than later.
Time is not our friend. As we see our children grow older, the challenges of PWS become more and more obvious. The things that could be overlooked in childhood create a wider gap between our children and their peers as they grow older. Our children have only one lifetime. Help us make that lifetime the best it can be. There is just no time to lose!
Working together, we can create a force stronger than PWS. Help us stand up to PWS and reclaim the lives our children should have had, lives full of hope, happiness, and choices. The answers we seek are out there. Join with us in this fight for our children. Yes, you are just one person, but you are not alone. Together, we make a powerful team and with our hearts as our guides, we will defeat Prader-Willi syndrome.
Rachel W. Tugon
Mom to Erin, with PWS