Thanks for joining us once again this year on our all-important quest to raise awareness for Prader-Willi Syndrome and funds for Prader-Willi research. Every year, as we hit new challenges and new milestones, the hope we put in research seems to grow exponentially as we feel we need something more to make Charlie’s life as great as it can be and his challenges as scarce as possible.
Charlie is now a teenager in middle school, and the transition has gone very well. We have a wonderful team of teachers in place, who are taking great care of him and challeging him to learn and progress every day! Charlie is not only spelling his name, but he can also read a bunch of words. Using his iPad for communication, he can tell people his address and phone number, and most importantly tell us what he wants! He still loves swimming and music therapy, and impressed us this year with his improving skiing skills, turning without any help!
On the flip side, we continue to struggle with severe anxiety, OCD and perseverative behaviors. At the moment, they seem somewhat more manageable because we seem to have found the right level of Oxytocyn dosage to help... until he grows out of it and we have to figure it out again! His appetite is still problematic, and we monitor his diet extremely closely.
As time goes by, we continue to keep an eye on research and new treatments, and feel hopeful for the future.
Please help us speed up the clock on the arrival of new treatments by making a donation or creating a fundraising page to help us raise funds and awareness for PWS. And we would also love for you to join us on May 30 for the Washington DC walk if you can!
Thank you as always for being such amazing friends!!