Tapping Into HOPE

A fundraiser benefitting PWSA | USA, hosted by Denise Servais (Mom to Maya, living with PWS)

MY STORY:
I recently started taking beginner tap lessons. One thing I learned right away was that adding metal to your shoes makes mistakes considerably less private. The teacher demonstrates a step. It looks simple, which I have learned is a trap. Then the music starts, and while everyone else is tap dancing, I appear to be troubleshooting.

There is something strangely familiar about all of this. When Maya was diagnosed with Prader-Willi Syndrome, I became a beginner in a world I never expected to enter. Suddenly there were new words, new specialists, and new ways of keeping my child healthy and safe. I listened closely and did my best, but there was no single routine that could prepare me for everything ahead. You learn one step, then another.

Just when you think you have found the rhythm, your child enters a new stage and the steps change. You adjust. You begin again. Learning to tap dance is obviously not the same as raising a child with PWS. But becoming a beginner again has reminded me what it feels like not to know the next step, and how much it matters to have someone there who can help you find it.

THE CHALLENGE:
To mark my birthday on October 7, I’m turning my new beginner tap adventure into a fundraiser for the Prader-Willi Syndrome Association | USA.

By December 15, I’ll work toward learning 15 beginner tap steps with a goal of raising $1,500 for PWSA | USA. I’ll share a few progress updates along the way and post a short recorded video at the end showing the steps, and a simple combination using some of them. I am not promising Broadway. My tap-dancing goal is considerably more modest: finish upright.

The number 15 has special meaning because PWS is caused by genetic changes involving chromosome 15. I’m suggesting a donation of $15 in recognition of that connection, although any amount is welcome.

WHY PWSA | USA MATTERS:
PWSA | USA provides families with information, advocacy, support, and access to people who understand the path because they have walked it too. It helps families face unfamiliar challenges without having to figure out every step alone. I still don’t always know what I’m doing in tap class or in life. But you don’t need to know the entire routine. Sometimes you only need help finding the next step. If you can, please help PWSA be there when another family needs help finding its next step.