It’s been quite a year for our family, with our move last June from Alexandria to Midlothian, near Richmond, VA. New house, new neighborhood, new school, new friends, new routines, new doctors, and more! We have settled in well, and are loving our new chapter in life. We had planned to participate in the annual One Small Step for Prader-Willi Syndrome (PWS) walk in DC again this year; however, Declan insisted we should do a walk in the Richmond area! And how could we refuse….we do these walks for him! So we will be walking on May 16th in our new hometown this year for Declan and all those living with PWS! (click on "Event Home" at the top of this page to view details for the walk [*if viewing on a mobile device, click on the menu icon -- 3 horizontal gray lines in the top right corner -- to access the "Event Home" link]).
One of the “new” things Declan has done since moving is join a local martial arts studio. As shown in the picture above, Declan passed his first belt test at Grandmaster Dong’s tae kwon do studio. It has been amazing to watch him adapt to a new studio and style of martial arts different from the style he started almost four years ago. In addition to Declan’s enjoyment, tae kwon do provides him a great physical challenge, mental discipline, and allows him to see the progress of his hard work. Declan’s determination, ability to focus, and willingness to try new things in tae kwon do inspire us as a family resulting in the family nickname – “Mighty Declan.” The past eight years have been an amazing journey with Declan, with many challenges overcome or learned to deal with and the joys of watching someone grow and challenge himself. Our journey and joy from Declan are due to many – his martial arts instructors, teachers, numerous therapists, doctors, nurses, family, brother, and friends – that make what appeared a devastating diagnosis into something that would have seemed impossible. There are surely new challenges to come down the road, but Declan’s continued success not just in tae kwon do, but also in school and the community, represent all that hard work, persistence, love and HOPE can accomplish.
The progress and inspiration Declan has shown seems implausible from the first days and months of his life. We received a diagnosis of PWS at birth, and were told the outlines of what PWS means. The diagnosis highlighted the major symptoms of hypotonia (low muscle tone), developmental delays and hyperphagia (uncontrollable hunger). Declan has been affected by the first two since birth, and hyperphagia could strike at any time in children with PWS. The hyperphagia may be the most impactful symptom by not allowing people with PWS to lead independent lives. In a search to provide people with PWS an independent life, we have been raising and donating money to the Foundation for Prader-Willi Research (FPWR) for the past 8 years. FPWR and researchers have made great progress since Declan’s birth, and it’s clear to our family that FPWR-funded research is going to lead us to solutions we need so that our “Mighty Declan” will one day be able to live independently. So many parents of typical children talk about how they don't look forward to the day their children leave the nest; while we will miss him terribly, we are excited and hopeful that Declan will have the ability to leave the nest someday, just like his brother and peers. Finding a treatment for PWS so that he can do just that is what we dearly HOPE and dream for.
We need your help!! Please consider donating by clicking on the green “Donate Now” button above (or below if viewing on a mobile device) to help us find a cure for Prader-Willi Syndrome and to help Declan live a FULL and independent life! Every dollar raised through One Small Step goes directly to PWS research. No donation is too small. Thank you!!!
Please email me (firstname.lastname@example.org) with any questions!