I want to share a story about a Mom, her wonderful daughter who happens to have WS, and big dreams.
About a year and a half ago, I received an email from our local hospital saying that a family with a new WS diagnosis would like to connect. I’m about six years into this journey and often talk with newly diagnosed families. I reached out and that is how I first met Christie Rovinsky. Christie had a darling baby girl who had just been diagnosed with WS. In her FIRST email back to me, she wrote
“In addition to learning more about WS, I am also looking to become very active in charity work surrounding it. I feel becoming involved in the WS community will bring our family great joy and comfort. Knowing there is nothing I can do to change her diagnosis, the only things I can do to help seem to be charity and therapy.”
I’m pretty sure I told her in response to slow down and take things one step at a time, but for anyone who has ever met Christie, you know how laughable that is. She instead dove right in, and indeed focused on charity work and therapy. We talked about what therapies are most beneficial for our daughters, which therapists in the Philadelphia area were the best, and how to access more therapies through Early Intervention and CHOP. We also talked about how challenging it is to navigate the system, how expensive therapies could cost, and how hard it was logistically to fit everything in.
As a result of these early conversations and Christie’s passion, drive, and can-do attitude, the Bee Strong Therapy Initiative in honor of Everly Rovinsky was born. Christie managed to bring her vision to reality in under a year, and the Initiative will be offering an incredible menu of free, hands-on, highly interactive opportunities for the entire family with world-class therapists familiar with WS at the Convention in July. Below is just a sampling:
- Hands-on aquatic therapy in the pool with a world-renowned aqua therapist
- Lunch and Learn sessions with a Pediatric Sleep Expert
- Self-care for Moms and Dads: yoga sessions and social events
- “Make and Take” sessions to bring therapeutic tools home with you
- Lunch and Learn Session with a Speech Therapist, BCBA, and tutor experienced working with children with WS--check out the OT Lunch and Learn on Friday--spaces open!
If you’re attending the convention, I hope you will take advantage of as many offerings as you can—sign up here today. Many of you have signed up already, but we've recently added a few more sessions so check back. If you’re not attending this year, the initiative hopes to offer more opportunities in the years to come, using technology to make access to excellent therapy services easier. And if you see Christie, be sure to thank her for her big dreams, which are helping to bring high-quality therapeutic services to more of our kids than ever before.
President of the WSA Board of Trustees