When our son Will was born in 2020, we never could have imagined how much he would teach us about strength, joy, and resilience. At just 13 days old, we received the diagnosis: Prader-Willi syndrome (PWS).
I remember holding him and crying. The fear was overwhelming; the future suddenly looked so different from what we had imagined. The doctor began explaining what life with PWS might look like. He talked about how he thought we could estimate Will’s IQ, and the number he calculated wasn’t impressive. He told us we’d need to invest in locks right away and become very familiar with diabetes. I was terrified.
But even in those first days, when the fear felt so heavy, something inside me knew I had to keep going. I reached out to anyone and everyone I could, fervently searching Facebook for moms with kids who had the same diagnosis. Eventually, I found FPWR, and that changed everything.
Through FPWR, I connected with parents who didn’t just offer information; they offered hope. They were walking this same journey and working every day toward something better: treatments, breakthroughs, and ultimately a cure for PWS. Their encouragement gave me the strength to shift from fear to action.
During Will’s first year, my brother gave me a gift I didn’t realize I needed. He encouraged me to share Will’s story and created a video about our family’s journey. It featured our entire extended family committing to a healthier lifestyle and raising awareness for PWS. Watching that video for the first time was so emotional. It showed not only how much love surrounded Will, but also how powerful it can be to share your story. That moment gave me the courage to start speaking up and the initial urge to do something for our son.
Will has continued to amaze us. Every milestone, big and small, has been the result of his determination and the incredible support around him. From his first smiles to his first steps in his walker, Will has faced each challenge with grit and a joy that radiates from him. He reminds us every single day that numbers and predictions don’t define him - he does.
As our family learned more about PWS and saw the impact of FPWR’s research, we wanted to find a way to take action to help fuel the hope that carried us through those early days. That’s what inspired us to host One Small Step walk right here in Lincoln, Nebraska.
We weren’t sure what to expect, but our community showed up in full force. Over 160 people came out to walk with us, celebrate Will, and raise funds for PWS research. Together, we raised $17,000, a number that represents so much more than dollars. It represents hope, support, and love. Standing there surrounded by friends, family, and even strangers walking for Will, I felt that same emotion I did when he was first diagnosed, but this time, it wasn’t fear. It was inspiration.
Hosting our One Small Step event reminded us that while PWS is rare, we are far from alone. Each step, each connection, and each act of kindness brings us closer to a future filled with possibilities for Will and everyone living with PWS.
We’re so proud of our boy, and so grateful for this incredible community that continues to walk beside us — one small step at a time.
