Love, loss, and the road ahead

When Frank and Mikaila Schmidt’s son Hudson was diagnosed with Bohring-Opitz Syndrome (ASXL1), it was a diagnosis no one at their hospital in eastern Washington State had ever heard of. Like so many families in our community, they found themselves navigating the unknown—searching for answers, researching on their own, and ultimately connecting with one of the world’s few experts in this rare condition: Dr. Bianca Russell.

After Hudson’s diagnosis, the Schmidt family became quietly determined to seek answers and support. When he passed away, they looked for ways to carry his memory forward and support other families facing the same rare diagnosis.

That idea eventually became Hudson’s Handlebar Heroes—a way to honor Hudson and support other families affected by ASXL-related disorders.

As the ride took shape, Frank brought together a group of close friends and family to take on a 200-mile, single-day cycling event from Seattle to Portland. Though new to the sport, he found that cycling offered both a personal outlet and a powerful way to raise awareness for ASXL-related research.

The ride was a meaningful challenge—both physically and emotionally. Covering 200 miles in a single day, the team had trained for months to prepare. For Frank, it became a personal journey of reflection and purpose, inspired by Hudson’s strength. Wearing custom ARRE Foundation jerseys, the riders shared Hudson’s story along the route, helping raise awareness for ASXL-related disorders and keeping Hudson’s story present in every mile.

One of the most powerful and unexpected moments came when a new teammate joined the team: the LifeFlight pilot who had responded the day Hudson passed away. After finding the family’s fundraiser on social media, he wanted to ride as a tribute to Hudson.

The Schmidt family’s community rallied in beautiful ways. A local news station shared their story on Bohring-Opitz Syndrome Awareness day. Hudson’s NICU nurse donated custom mugs with the fundraiser logo. A bridal shop where Mikaila worked offered discounts to brides who donated. LifeFlight—where Hudson’s grandfather works—became one of the ride’s sponsors, along with Hotstart, another local business. In total, Hudson’s Handlebar Heroes has raised over $19,452 for ASXL-related disorder research.

For Frank, the ride wasn’t just about cycling. It was about channelling Hudson’s spirit and the strength and resilience he showed every single day. “Committing myself to such a long endurance sport is my way to keep pushing through, like he showed me,” he said. “This has given me meaning and purpose. A way to give to someone else, like Hudson gave and showed me.”

The Schmidt family has no plans of stopping. They’re already thinking about what’s next: more rides, more awareness, and more support for ASXL families. Their website and merchandise have helped spread their message even further. What started as a simple idea has grown into an ongoing effort fueled by love, loss, and a desire to make a difference for others in the ASXL community.

“It means a lot to me personally,” Frank said. “It’s a simple mission with a huge purpose and drive. A way our family—and Hudson—can have an impact and help the next family and all the kids still with ASXL who are still here.”

We are truly grateful to share Hudson’s story and deeply appreciate the Schmidt family’s courage, compassion, and dedication. This is just the beginning—and we’ll be cheering them on every step of the way.

For more information or to contribute to the fundraiser, please visit the Hudson’s Handlebar Heroes website.