On the occasion of Declan’s tenth birthday this past April 14th, I wrote, “It’s a decade of Declan!” More completely, it has been a decade of our family living in the world of Prader-Willi syndrome (PWS). How very frightened we were ten years ago when we learned our tiny newborn struggling to feed had this scary-sounding condition called Prader-Willi syndrome. What we initially learned about PWS sounded so negative. But what we have learned in these ten years is that while it is a serious and complicated disorder, life can be still be beautiful and amazing! Declan has persevered through so many challenges, and is turning into quite the unique and special guy. Ten years ago, I never could have pictured he would be thriving in school – in a general education classroom – and demonstrating quite the zest for life! Things we didn’t know at birth if he would accomplish – as basic as walking and talking, learning to eat without a feeding tube, and on to reading and writing, have all come to pass. Declan loves music, game shows, has made special friendships with his classmates and peers, practices tae kwon do, and loves swimming and playing the piano! But there are still challenges ahead, as we edge ever closer to adulthood. He talks about going to college and getting married, and having a job. Our dearest hope for him is that he will be able to do all of this independently, and will not be stymied by the challenges of PWS. So many people with PWS are unable to live independently as adults due to hyperphagia (insatiable appetite), the hallmark symptom of the disorder. This overdriving urge to overeat is so dangerous that it can lead to morbid obesity. This is why we continue to fundraise every year, as our community needs a treatment that will allow Declan and all those with PWS to overcome the challenges of PWS so they can successfully “Live Life Full” on their own.
We are so excited to be returning to the DC walk this year! Not only is it the tenth anniversary of the walk, but it is also our tenth anniversary of attending that first walk! Declan was not yet home from the hospital when I attended that first walk, and first met members of the PWS community. Our community is small yet mighty, and determined to find treatments for our children to give them the independent lives they so deserve. We hope you will join us, either at the walk or supporting our fundraising efforts, or both! Thank you to all who have supported us in the past, and for everyone who always takes an interest in Declan and how he is doing!
Funds raised will be used to advance PWS research through the Foundation for Prader-Willi Research. You can learn more about PWS and the research that is underway at http://www.fpwr.org.
Please join us and donate now!