A special contribution by guest blogger Charlotte Kellar.
When Charlotte Kellar’s daughter, Cadence, was diagnosed with Prader-Willi syndrome (PWS) at just four weeks old, she was handed a long list of “cannot”s — things her daughter might never do. But what Charlotte didn’t expect was the fierce grit, unwavering determination, and ridiculously positive attitude with which Cadence would face every challenge.
“To doubt your own child is one of the worst feelings in the world,” Charlotte says. “I knew Cadence would face lifelong challenges. What I didn’t know was how brightly she would shine doing it.”
Charlotte credits her family and Cadence’s care team at the University of Wisconsin Hospitals and Clinics for their constant support, but says the broader PWS community, especially those engaged with FPWR, played an equally vital role early on. “They were the first people we looked to for a glimpse of what our journey with PWS would look like,” she recalls. “They instantly gave us hope.”
That sense of hope pushed Charlotte to do things she never thought possible — including running two 5Ks in 2020. “One was for PWS research, and the other was simply because Cadence asked me to,” she says. “I’m not a runner and never will be, but my daughter inspired me to push past what’s comfortable — just like she does every day.”
To parents whose child was recently diagnosed, Charlotte’s advice is simple and heartfelt: “The first days are the hardest days. Take a moment to breathe and process, gather knowledge and support from reputable sources, and then go enjoy your child just as you’d planned.”
When she looks ahead, her hope lies in progress and perseverance — “Research. Development. Clinical trials. My daughter’s spirit.” She’s deeply thankful for her family, her education, her work, and the ability to advocate effectively for her child. Along the way, she’s gained perspective: “Everyone has their thing — some things are just bigger than others. People fight invisible battles with heart, grace, and perseverance. And your faith — whatever that looks like — really is stronger than your fear.”
Charlotte says raising Cadence has shown her the depth of her own strength, tenacity, and instincts. “Trusting my PWS gut has enabled me to do so much for Cadence throughout her seven years.”
She also reflects on the mindset shift that comes with parenting a child with PWS: “Most people see what is and never see what can be,” she says. “As parents, it becomes our instinct to change that — to advocate for the future we know our children deserve.”
