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.
Over the past year, we’ve definitely seen some ups and downs. Among the ups is Charlie can now spell his name (first and last, and we don’t have an easy name!!), he knows our phone number, he can count to 100, make short phrases and occasionally sentences with his AAC (his iPad with a communication app). And he is excellent at making anyone understand what he wants. He adores going to school. He still swims and loves it, and he LOVED skiing over the winter. He loves taking music lessons and is getting enthusiastic about some puzzles. He also loves to watch his brothers play PokePark on the Wii. He is determined, perseverant and has excellent problem solving skills, and those qualities can sometimes get him into trouble! He is also a snuggle bug and always extra sweet with everyone!
On the flip side, we’ve had a hard time getting him to regulate his impulse control, so he is prone to pounce at things or people if he sees something he wants, especially if he knows he’s not supposed to get it! It has made making outings and visiting friends in their homes very difficult. Repetitive behaviors and OCD behaviors have been very challenging, getting in the way of learning often, and taking over his whole life! His appetite still continues to be all-consuming and to worry us.
That being said, we are very thankful for the team of doctors and therapists supporting him, from the absolutely amazing Dr. Miller, endocrinologist extraordinaire, all the way to his ABA coach who has guided our approach both at home and at school, and everyone in between! We are also very fortunate to be able to benefit from Oxytocin treatment. While it’s still being experimented with and we are having a hard time figuring out the right dose, it’s helped tremendously curb at least some of the repetitive and OCD behaviors, his anxiety and improve his sleep! We can’t wait to see other treatments surface that will quite literally change his life for the better!
And that is why we continue, year after year, to host this walk, and fundraise for PWS research (and bug you to donate in the process, thank you!!!!).
If you can, please join us for the walk on June 1, we’d love to see you, the more the merrier! And if you can, please consider donating to our page and help us raise funds for PWS research, to help find treatments and solutions to the challenges, present and future, that Charlie faces!