A special contribution by guest blogger Blake Brenneman
When our son, Evan, was diagnosed with Prader-Willi syndrome (PWS), I assumed his progress would be slow. But he has exceeded every expectation. At just 15 months old, his understanding of the world around him amazes us. He may not say much yet, but he knows exactly what we’re talking about — pointing, signing, and finding his own ways to communicate. His receptive language and determination constantly remind us how capable and resilient he is.
There have been moments on this journey that pushed us far beyond what we thought we could handle. I’ll never forget the early days in the NICU, when I had to learn how to place an NG feeding tube. It felt impossible at first — especially when Evan squirmed and protested (who could blame him?). But we did it, and we kept doing it. It was stressful and emotional, but that tube helped him survive those fragile first months. We’re deeply grateful for it, though we certainly don’t miss it now.
Through all of this, my wife Natalie has been my greatest source of strength. She’s the one who dives deep into research, stays active in parent groups, and plans Evan’s meals with care. She somehow manages to keep a squirmy toddler happy through endless therapy sessions and doctor’s appointments. She’s an incredible mom, and Evan and I are so lucky to have her leading the way.
To parents whose child has recently been diagnosed with PWS, I’d say this: don’t focus on what you think your child won’t do — because you don’t know yet. None of us do. My wife and I often say, “If only we could have seen a picture of Evan today when we were still in the NICU.” Back then, we spent too much time feeling sad, not realizing how much joy was ahead. Learn about the diagnosis, yes — but more importantly, get to know your child. They’ll surprise you every day.
We have so much hope for the future, thanks to the incredible progress being made in PWS research. FPWR’s commitment to advancing science gives us confidence that new treatments — and brighter tomorrows — are coming. That’s why we’re passionate about supporting this organization and the work they do.
I’m thankful every day for our family, our friends, the PWS community, and the researchers and doctors working on behalf of our kids. And, of course, for our energetic, curious, Elmo-loving little boy who brings so much light into our lives.
This journey has changed me in ways I never expected. I’m more patient now, more empathetic, and I have a deep respect for families navigating special needs of all kinds. It’s also revealed strengths I didn’t know I had — the determination to fundraise, organize events, and help build a movement that makes a real difference. Whatever talents or passions you have, you can use them to fuel this mission and help our kids live life full.
When I think back to those early days after diagnosis, I realize I once saw only what was. Now, I see what can be. And it’s so much more beautiful than I ever imagined.
