Reagan’s journey inspires everything we do.

When she was a baby, we noticed she was reaching her milestones later than expected - sitting, crawling, walking, and talking all came slowly. As parents, we knew something felt off.  After months of questions, a neurologist ordered imaging, and our world shifted. At just eight months old, Reagan was diagnosed with hydrocephalus, a condition where excess fluid builds up in the brain. She needed surgery immediately. At just eight months old, she underwent her first brain surgery.  Her neurosurgeon, Dr. Mark Souweidane at Weill Cornell in New York City, performed an Endoscopic Third Ventriculostomy, a procedure to restore the natural flow of fluid in her brain.  The surgery was a success, but eight months later, the pathway closed and Reagan needed her second brain surgery.  Thankfully, the ETV continues to work well more than a decade later.

Those early experiences shaped our family and inspired us to act. We became the Connecticut State Chapter Directors for the Pediatric Hydrocephalus Foundation, helping raise awareness and fund research toward better treatments and hopefully one day a cure. Together with our community, we’ve raised over $500,000 for hydrocephalus research and created the Reagan Sloane Shanley Scholarship, which has awarded more than $300,000 to students and researchers working to advance the field.

But Reagan’s story didn’t end there.

As time went by, it became clear that there was more to understand. Genetic testing revealed that Reagan has a rare chromosome duplication at 17.p13.1 which explains her ongoing developmental and cognitive challenges.  Reagan has been diagnosed with an intellectual disability that affects how she learns, communicates, and navigates the world, but not how brightly she shines.

Reagan is curious, funny, social, and strong-willed. She loves music, dancing, playing the drums and cheering for her brother at hockey games - always moving to her own rhythm.  Her joy is contagious, and her determination inspires everyone who meets her.

Now, as she enters her teenage years, we’re thinking even more about her future, and the futures of others like her. We want Reagan, and every individual with intellectual disabilities, to have access to community, meaningful work, and supportive housing so they can live full, connected and independent lives

Reagan’s rhythm is the heart of our mission — a reminder that when people are supported, celebrated, and given the chance to thrive, their unique light shines even brighter.

— Cindy and Tim Shanley