Our Journey...

 

On October 3, 2014, our lives changed forever.

When our son, Stetson, was just 17 months old, he was diagnosed with Angelman syndrome. In an instant, the future we had imagined looked very different, and our world was completely turned upside down. Like many families receiving a rare disease diagnosis, we were overwhelmed with questions, uncertainty, and fear. But we also knew one thing immediately: we would do everything possible to help Stetson live his best life.

That same day, we began our journey of learning everything we could about Angelman syndrome through the Angelman Syndrome Foundation. We immersed ourselves in research, connected with other families, sought out therapies, and educated ourselves on how to best support Stetson's unique needs and abilities.

Over the past 12 years, Angelman syndrome has become more than a diagnosis in our family—it has become our purpose. We have dedicated countless hours to fundraising efforts that support research, family resources, advocacy, and therapeutic opportunities for individuals living with Angelman syndrome. Through community events, awareness campaigns, and the incredible support of family and friends, we have witnessed firsthand the power of people coming together to create meaningful change.

As Stetson has grown older, our focus has naturally shifted toward the future.

While there are increasing opportunities and resources available for children with intellectual and developmental disabilities, the reality is that options become far more limited when individuals reach adulthood. Families are often left wondering what comes next. Where will their loved one live? How will they continue to learn, grow, build relationships, and contribute to their communities? For individuals with significant support needs, these questions can be especially challenging.

As we began planning for Stetson's future, we quickly realized that we could not wait until adulthood arrived to start searching for answers. We needed to begin building those answers now.

That realization became the foundation for Stetson's Place.

Stetson's Place was created from both a parent's love and a family's determination to ensure that individuals with intellectual and developmental disabilities have opportunities to live meaningful, fulfilling lives beyond childhood. We envision a place where adults are valued for their abilities, supported in their goals, and empowered to participate fully in their communities.