Spotlight on Hope: Ada Thrives and Shines

submitted by Caitlin Heckman, mom to Ada (1, living with PWS)

We received Ada’s PWS diagnosis when she was one month old, and, like everyone in this community, our world was turned upside down. This condition we previously had no idea existed became the center of our attention. The NICU doctor who gave us her diagnosis pointed us to PWSA, and Kristi Rickenbach called us a few days later. It was honestly one of the best gifts we could have asked for, and after more than an hour on the phone with her, we had so much hope for Ada’s future. We dove head-first into researching everything we could, determined that Ada would have the best life possible.

Ada just celebrated her first birthday and she is absolutely thriving! She receives weekly PT, OT, and feeding therapy sessions. She graduated from her NG tube at 9 months old and is loving the process of trying new foods. She can sit independently and has realized she has feet! She loves to show off that she can stand (with help) and has recently developed an interest in dumping toys out of their respective containers. She loves playing with her big sister and is the happiest kid we’ve ever encountered. Ada just lights up when she sees people she loves, and she is very quick to give everyone she meets a big smile.

Just like so many in this community, we know the feelings of grief, hopelessness, and anxiety that accompany a PWS diagnosis, and everyone told us the first year would be really tough. Now, being on the other side of that first year, yes, it WAS really tough, but we have accepted that Ada is on her own timeline and we know she is going to continue to impress us. Ada continues to show us every day how strong and resilient she is, and we love that she brings so much light and happiness to our lives!

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