NARS1 Family Stories - The Dregney Family
High on a bluff in rural Wisconsin, down a quiet gravel road surrounded by crops and woods, life in the Dregney household is full, busy, and deeply connected. Mackenzie, her husband Josh, and their three children, Talan (12), who lives with NARS1 Disorder, along with his younger siblings, Noxan (5) and Haysan (almost 3), spend most of their time outdoors, playing sports, or simply exploring the world around them. Two dogs have recently joined the family too, much to the delight of all three kids.
Almost three years ago, Mackenzie left her career as a Victim Witness Coordinator when the family could no longer find childcare that could meet Talan’s needs. Since then, her days have revolved around supporting him, from therapy sessions to school routines to helping him navigate the world in a way that feels safe and joyful. “It’s become my mission to do everything in my power to support him,” she says.
Talan’s Journey
Talan was born full-term, big, healthy, and seemingly thriving. But at just 11 weeks old, everything changed when he had his first seizure. It was the beginning of a long and emotional journey to uncover what was behind his delays, feeding challenges, and vomiting that soon led to a diagnosis of failure to thrive. Eventually, he needed a G-tube to help him get the nutrition he needed.
At age two, Talan underwent genetic testing, but the results didn’t give the family the answers they desperately needed. Over the years, he made small developmental gains, often functioning at about half his age, but by eight years old, he was falling even further behind.
It wasn’t until 2022, when a neurologist recommended repeating genetic testing, that the family finally received a diagnosis: NARS1 Disorder. Talan was nine years old.
After so many years of searching, Mackenzie says the diagnosis was both heartbreaking and clarifying. “For so long, we didn’t know what we were dealing with. Getting an answer didn’t change everything - but it finally gave us a direction.”
Life Today
Now in middle school, Talan is a social, bright, and energetic kid who loves interacting with others. “He’s turned into quite the jokester,” Mackenzie says. “He loves making people laugh. His smile can light up a room.”
Like most NARS1 Kids, he likes to wake up early! He takes a 40-minute bus ride to school every morning, but he genuinely loves school, especially the structure, the social time, and most importantly playing drums in a band.
Mackenzie now works part-time while Talan and his siblings are at school, which allows her to keep each weekday as consistent as possible. Routine is important because “Talan is a creature of habit and struggles with anxiety when things change.”
After school, Mondays and Thursdays are dedicated to music therapy. On Tuesdays, he spends an hour with his mentor. The rest of the week varies depending on the season, right now, Wednesdays are spent taking Noxan to sports camp through the YMCA, and whenever possible, the family cheers on Mackenzie’s nieces and nephews at their sporting events.
Weekends are just as full. Talan participates in an adaptive baseball league and recently joined adaptive soccer. And Sundays are non-negotiable: first soccer, then “cheering on the Green Bay Packers.”
Swimming is another favourite activity, thanks to Mackenzie’s mom. “We’re very fortunate that my mom has a swimming pool in her apartment, so Talan is able to swim year-round.”
“He doesn’t like to be bored and always wants to be on the go. Overall, he’s just a happy kid.”
Communication continues to be one of the biggest challenges the family faces. “His expressive communication is still around a 2 to 3-year-old level. His almost 3-year-old sister actually uses more words and communicates more effectively than he does. This has been a frustrating process for both him and us. The communication barrier often leads to unwanted behaviors, as he struggles to express his needs and feelings. It also impacts his ability to interact with others which is something he truly loves to do.”
Even through the tough moments, one constant keeps the family going: “Talan can light up a room with his smile. His smile has truly helped me through some of our toughest moments.”
The Power of Community
Support has come from many directions. “My husband, Josh, has been a huge source of support for our family, especially by taking on the financial burden that came with me no longer working full time.”
Their small community has shown nothing but kindness. “Everyone seems to know Talan, and they’re always so kind and welcoming.” His school staff “have become like family to us, offering constant support and understanding.”
And then there’s Grandma Jackie, the family’s anchor. “She supports us almost daily. Beyond the help she gives with Talan, she’s always willing to care for his siblings during appointments, which means so much to us.”
Finding the Rory Belle Foundation has also made a real difference. “Now that I’ve connected with a few other families, it feels like a weight has been lifted - knowing that others truly understand what we’re going through. For so long, I’ve felt alone on this journey.”
Looking to the Future
Mackenzie’s hope for Talan is that he finds happiness doing the things he loves. “He enjoys pretending to work and often says he wants to work at our local grocery store, or really any store, so he can interact with others.”
The family knows he will be a forever child and have already started imagining what long-term support might look like, “a tiny house or an apartment above our garage for him someday,” though those decisions are still years away.
Her message for other families beginning this journey is honest, gentle, and full of heart: