A Place Where Every Child Is Celebrated

One family’s journey of resilience, connection, and belonging

When their first son, Michael, was just three months old, his parents received life-changing news: he had been diagnosed with Hirschsprung’s Disease, a rare gastrointestinal illness. What followed was a difficult first year filled with multiple surgeries, including a total colectomy when Michael was just nine months old.

Two years later, their family grew again with the arrival of their second son, David—who was diagnosed with Down syndrome and a congenital heart defect known as AVSD.

For many families, managing even one medically complex diagnosis can feel overwhelming. For this family, navigating the unique needs of both sons has required resilience, flexibility, and an unwavering commitment to staying prepared.

Today, they’re grateful to say life feels much more balanced.

“We’re lucky in that both of our children lead reasonably normal lives these days,” their father shares. “They attend school, spend time with friends and family, and stay busy with extracurricular activities.”

Michael still requires careful attention to his GI health, including staying constantly hydrated and attending pelvic floor therapy. David’s schedule includes speech and occupational therapies, keeping the family calendar full—but in the best possible way.

While medical anxiety remains a constant undercurrent, it no longer defines their family’s day-to-day life.

“I feel that medical anxiety plays a prominent role in our lives, but that’s more about being prepared than living life scared.”

As they look ahead, their hopes center especially on David’s future and helping him build the skills and support he’ll need to one day live independently.

Through every challenge, one thing has made a profound difference: community.

“Better2gether has been a beacon of belonging for us,” their father says. “While we feel welcomed by our community at large, we sometimes go to events where differences are noticed. At Better2gether, the children are not just welcomed—but celebrated.”

That sense of belonging has touched every member of their family. Over the years, they’ve participated in many Better2gether programs and events—from the Golf Classic and Halloween Hustle 5K to Mom’s Respite and family parties.

“We’ve done a ton! Michael especially feels a sense of ownership of it all. He has such a strong connection to this organization—he considers Better2gether his organization.”

Now, their father is looking forward to becoming part of Dads2gether, Better2gether’s growing program designed to connect and support fathers navigating similar journeys.

“I’m excited to connect with dads who have been through similar stressful life experiences,” he says. “Ideally, the group will be a place for support and fun—but also a way for us to give back to this special community through service and fundraising.”

For this family, Better2gether has become more than a resource—it’s a place where they feel understood, supported, and surrounded by people who truly get it.

And perhaps most importantly, it’s a place where every child—including Michael and David—is celebrated exactly as they are.