A special contribution by guest blogger Joni Augustine.
When Branden was born 30 years ago, there weren’t nearly as many resources or support networks for families affected by Prader-Willi syndrome (PWS). Doctors told me he would never walk and that his life expectancy was low. I was devastated — heartbroken in a way that’s hard to describe.
But then, one day when Branden was almost two, he scooted over to the wall, pulled himself up, and started walking. Just like that. From that day forward, I never treated him any differently. He has continued to thrive — happy, determined, and meeting each of PWS’s challenges with the heart of a champion.
A Message to New Parents
If your child has just been diagnosed with PWS, I want you to know that although it may not feel like it right now, you are about to receive one of life’s most incredible gifts. My son has brought more love, strength, and joy into my life than I could have ever imagined.
I had to let go of my idea of what I wanted life to look like and instead focus on giving Branden what he needed. He did the rest. You are truly blessed — even if it’s hard to see in the beginning. Take deep breaths. Take it one day at a time. And remember, even on the hardest days, the sun still comes up every morning.
Gratitude and Growth
I’m thankful every day for my son and for the countless ways he enriches our family’s lives. The quote, “Until you have a kid with special needs, you have no idea of the depth of your strength, tenacity, and resourcefulness,” couldn’t be more true.
The gifts this journey brings aren’t tangible, and they can be hard to explain to those who are newly navigating the sadness of a diagnosis. But they are real. Over time, I realized that much of the growth wasn’t in Branden — it was in me. I often felt like I was the one with special needs, learning and stretching and finding new strength every day. It’s been a blessing in ways I never expected.
"Most people see what is, and never see what can be."
Education was our greatest challenge. We had to help others see Branden’s potential. My advice to other parents: know your child’s rights, and be their advocate. Your child can accomplish amazing things. Surround yourself with people who believe that too. And don’t forget the power of love, humor, and laughter — they really are the best medicine.
