A Special Ball for My Son

On Saturday, November 4, I will be in Waukesha, Wisconsin, dancing the night away with over 150 individuals with special needs at the Prader-Willi Syndrome Association of Wisconsin, Inc.’s annual Formal Ball. This will be the 12th formal ball I have planned/executed for the Association since joining the board in 2000, and it is one of the highlights of my year! 

The Prader-Willi Syndrome Association of Wisconsin, Inc. (PWSA-WI, Inc.) is a nonprofit organization that supports, educates and advocates for persons with Prader-Willi Syndrome (PWS), their families and professionals in meeting the challenges of this disability. Prader-Willi Syndrome is a complex genetic disorder resulting from an abnormality of the 15th chromosome. It typically causes low muscle tone, short stature, cognitive deficits, incomplete sexual development, chronic feeling of hunger and challenging behaviors. Prevalence estimates range from 1:15,000 to 1:25,000. My son, Kyle, is one of those individuals who was born with PWS. 

Because PWS is so rare and social media wasn’t the norm when Kyle was diagnosed in 1995, the process of finding a diagnosis and people who understood the syndrome was difficult and lonely. My family and I spent the first five years of Kyle’s life navigating this new world by ourselves until we relocated to Wisconsin and I was introduced to the vice president of PWSA-WI, Inc. I immediately found my new PWS family and joined the board of directors. Throughout my time on the board, I have served in many roles, most recently as the president (14 years and running). 

As the president, I have had the pleasure of planning numerous events, but the formal ball is one of my favorites. This event allows individuals with PWS to participate in a prom-like experience that many of them would never have the opportunity to attend. When attendees arrive, they are given a handmade wrist corsage or boutonniere (yes, this is one of my hidden talents) and have their picture taken by our professional photographer. Everyone is then seated and served a “fancy” calorie-conscious meal by our volunteer board of directors. 

Once most of the participants have finished their meal, the dancing begins! This part of the event is my favorite because everyone on the dance floor has huge smiles on their faces. Favorite songs include the Cupid Shuffle, Chicken Dance, Electric Slide and Thriller. At the close of the evening, everyone is exhausted but in the best way possible. Although there is a lot of work that goes into planning this event, it is absolutely worth it, especially when at the end of the night the participants are already asking when the formal ball will be held the following year. 

I continue to volunteer for the Association because I know we are making a difference in the lives of those we serve. Every time we host an event and I look around and see the smiles on everyone’s faces, I know it’s worth it.