In St. Petersburg, Florida, Chrissy and Matt Dickhaus are raising two little boys who bring light and joy into their lives every single day. Carson, age 3, is the proud big brother to Connor, who recently turned one. To celebrate, the family threw a joint monster truck birthday party at a splash pad, followed by a trip to the Florida Aquarium, dinner, and of course, a smash cake just for Connor.
It was a celebration full of love and gratitude, because Connor’s first year has been a journey filled with both challenges and triumphs.
Connor was diagnosed with Schaaf-Yang syndrome (SYS) at just six weeks old, following a two-month stay in the NICU. Before the diagnosis, he was often described as a “medical mystery.” Chrissy, a registered nurse, recalls the moment she first saw his test results: “I actually saw the results on MyChart and quickly googled it before anyone explained it. I came across the First Steps guide and found the Facebook group for parents. By the time the geneticist spoke to us, I felt like an expert.”
That fierce determination to learn and advocate became a guiding force for the Dickhaus family as they navigated their new reality with SYS.
Connor’s first year brought obstacles most families never imagine. While he was still in the NICU, Hurricane Helene struck and flooded their home, leaving them displaced just as they were preparing to finally bring him home. On top of the upheaval, Chrissy’s days quickly filled with a constant rotation of therapy sessions and follow-up appointments. “Some weeks I had more than one appointment in a single day,” she remembers.
The emotional weight was equally challenging. “The unknowns were the hardest part. Every time we had an appointment or a test, I braced myself for more bad news,” Chrissy admits. Watching other children hit milestones before Connor could was difficult, too. But she found strength in celebrating his own timing: “It’s even more exciting when he does it on his own. Every milestone means so much.”
His favorite activities reflect his playful, curious spirit. He loves interactive toys that light up and make sounds, watching Ms. Rachel, and spending time with his big brother Carson.
The Dickhaus family has leaned on a strong network of family and professionals who have made the journey easier. Chrissy’s mother quickly immersed herself in learning everything she could about SYS and G-tube care, and now plays a key role in supporting Carson so Chrissy and Matt can focus on Connor’s medical needs.
Their care team at Johns Hopkins All Children’s Hospital has also been an anchor, providing guidance during Connor’s NICU stay and ongoing specialist care. Chrissy and Matt are especially grateful for the physical and occupational therapists who have invested in Connor’s progress, and for Dr. Miller, whose expertise has been instrumental.
For Chrissy, the biggest lesson from this first year has been learning to take things one day at a time. When Connor was first diagnosed, she admits she was devastated: “I couldn’t picture what his life was going to be like. I spent so much of the first year worrying that I lost time just enjoying my sweet baby boy.”
Now, she focuses on the present, finding joy in each milestone and moment. “There are still unknowns about the future, but I try to think about what he’s already accomplished and just enjoy him right now.”
As they look toward the future, the Dickhaus family is hopeful. They believe in the promise of science and genetic therapy, and they are encouraged by the steady progress Connor continues to make. Above all, their dream is simple: a happy, healthy life for their son.
“Raising a child with SYS is hard, but it’s so rewarding,” Chrissy says. “Connor has shown us strength, resilience, and joy we didn’t know was possible. We’re hopeful for the future and grateful for every single day with him.”
Connor’s story is just one example of the strength, resilience, and hope that families in the SYS community demonstrate every day. By joining the Foundation for Prader-Willi Research (FPWR), you can connect with other families, access resources, and help support research that drives better treatments and brighter futures for children like Connor.
Learn more or reach out: nicci@fpwr.org