When I reflect on my connection and gratitude toward another person in relation to PWS, Cheri Wood comes to mind. As founding members of the Texas Prader-Willi Association about 12 years ago, we share a similar passion for the well being and future of those with PWS. I was (am) dumbfounded by the challenges this disorder presents. I’m blown away by how insanely time-consuming coping with the complexities of our disorder is, and by the costs. I’m profoundly concerned for the effect on siblings, the lack of social opportunities, poor representation in the legislature, and, most importantly for me, as an older parent, what will happen to my child when I am gone?
Cheri and I worked together on many issues, but a driving force for us was having a camp specifically for those with PWS. One day, 10 years ago, Cheri called me and the conversation went something like this, ‘I found a camp that’ll have us, but it’ll cost money and we have to provide our own nurse.’ I said, ‘I can raise money, (our annual golf tournament), and I’m a nurse.’ That August, TXPWA held our first People With Smiles Camp. It’s been a phenomenal success every year since. We were geared up to have our 10th Anniversary blow out camp celebration this year, but like so many other events and activities, it has been postponed due to Covid-19. With so many precious, disappointed campers we’ve decided to hold our camp dance anyway – virtually – on November 14th.
To say I am grateful for the determination and tenacity Cheri Wood has granted to the Prader-Willi community would be an understatement. With passionate allies on our side, hope for the future has never been brighter.
It is with this spirit of thankfulness, connection, gratitude, and hope for a brighter future that I challenge you to also look on the bright side and share your story as part of our #GratitudeChallenge to the PWS community. Simply share a photo of someone in the PWS community for whom you are grateful, and tag 5 others to do the same. Together, the PWS community has already achieved so much, and together, we will continue to achieve so much more.
Mom to Joseph with PWS
President, Texas Prader-Willi Association