My granddaughter, Whitnee, arrived eight weeks early, and from the very beginning, her journey was anything but ordinary. 
Soon after her birth, Whitnee was airlifted by helicopter to Cook Children’s Medical Center. The small hospital where she was born quickly realized she needed more care than they could provide. My daughter, Jessica, lived too far away for me to get there quickly, and I remember the overwhelming fear of waiting - waiting for updates, waiting for answers, waiting to know if my daughter and granddaughter were going to be okay.
In the days that followed, it became clear that Whitnee was different from the average preemie. Then came the phone call that shattered my heart. Through tears, my daughter said, “They think something is wrong with her.” After genetic testing, we received the diagnosis: Prader-Willi syndrome.
Like so many families before us, my first response was simple and raw: What?
Whitnee spent several weeks in the NICU before finally coming home, and that’s when the real journey began. Growth hormone injections. G-tube feedings. Occupational therapy. Physical therapy. Speech therapy. Endless appointments and countless hours devoted to helping her grow stronger and live as fully as possible.
Milestones didn’t come easily. Rolling over, sitting up, crawling, walking; each one was delayed, but every single one was achieved. And every victory was celebrated.
Though my husband and I (Mimi and Papa) live 950 miles away, distance has never stopped us from being part of Whitnee’s life. We cheer her on through FaceTime calls, phone conversations, and treasured visits. Watching her determination and progress, even from afar, fills us with pride.
There are still challenges. Whitnee’s speech, like that of many individuals with PWS, is different, and she continues to work hard in that area. She has made tremendous progress, but the most difficult hurdle remains hyperphagia; the constant, insatiable hunger that affects those with PWS and shapes daily life in ways most people never have to imagine.
Because of the ongoing research funded by FPWR, I truly believe a future without constant hunger is possible. There are clinical trials today because of this commitment to research. Whitnee participated in a trial for hyperphagia that showed promise for her. When that trial was unexpectedly ended, it was heartbreaking for all of us, a hard pill to swallow, but we did not lose hope.
We remain hopeful that another opportunity will come. Hopeful that science will continue moving forward. Hopeful that answers are closer than they’ve ever been before.
Today, Whitnee continues to grow, learn, and show the world what resilience looks like. She brings plenty of sass and joy into her brothers’ lives, and she fills our lives with light, laughter, and love.
Mimi and Papa love her beyond words. And we believe, with all our hearts, that her future will continue to grow brighter because of her strength, her family, and the promise of research that gives families like ours hope.
