Ellie’s Story: How Supporting Connecticut Kids Changes Lives

A Childhood Supported by Care, Community, and Hope

Meet Ellie

For Ellie, visiting the hospital doesn’t feel scary. It feels familiar. It means seeing her favorite doctors, laughing with staff who know her well, and playing video games in her dad’s office at Connecticut Children’s Family Resource Center.

Ellie was born with Down syndrome and several medical conditions that affect her health and development. She has a congenital heart defect that limits her stamina, a thyroid condition that requires regular blood tests and daily medication, and low muscle tone that contributes to gastrointestinal challenges. From the very beginning, Ellie’s life has been shaped by the need for ongoing, coordinated care—and by a healthcare community that has supported her every step of the way.

Growing Up with Ongoing Care at Connecticut Children’s

Ellie’s care at Connecticut Children’s spans multiple specialties and therapies, and her journey continues to evolve as she grows. She is followed regularly by cardiology to monitor her heart defect, and her thyroid condition is carefully managed through routine bloodwork and medication. She also works closely with physical therapists to build strength, since low muscle tone is common among children with Down syndrome.

In addition, she receives speech and occupational therapy, helping her develop communication skills and independence. Her care plan ebbs and flows over time, adjusting to her needs at each new stage of development. Through it all, Ellie approaches appointments with a smile and an infectious laugh, taking everything in stride with the confidence that comes from being surrounded by people who know her and believe in her.

More Than a Diagnosis

Now 13, Ellie is joyful, determined, and full of personality. She loves school, playing baseball, telling jokes, hanging out at the beach, and swimming in the ocean. She also loves playing with her younger brother and sister and being unapologetically silly.

She thrives at school with the support of her Individualized Education Plan (IEP), which helps her work toward both big and small milestones every day. One of her favorite days is when her dad, Evan, joins her at school to read a book to her class about Down syndrome.

“I explain that Ellie has ‘dislikes’ and ‘likes’ just like everyone else and feelings just like everyone else,” Evan says. “Her disability doesn’t define her. There is so much that defines her, but not Down syndrome.”

Ellie as Connecticut’s CMN Champion Child

As Connecticut Children’s 2026 Children’s Miracle Network Champion, Ellie will serve as an ambassador for children and families across the state, helping to raise awareness for Connecticut Children’s, the local Children’s Miracle Network member. Champions and their families play a vital role in motivating and inspiring local CMN partners by sharing their stories during fundraising campaigns and community events. Ellie and her fellow Champions nationwide are living proof of the importance of strong charitable support for children’s hospitals—and how that support changes lives.

What It Means to Be a CMN Champion

Throughout the coming year, Ellie will help shine a light on programs, services, and specialized care that families depend on at Connecticut Children’s, care that is made possible through philanthropy. Champion kids like Ellie help put a face to the mission of Children’s Miracle Network hospitals, reminding supporters that every dollar raised helps ensure that kids receive the care they need, close to home. Her voice will help amplify the message that when a community comes together, extraordinary things happen for kids.

Why Community Support for Connecticut Kids Matters

Ellie’s story is one of many in Connecticut, but it underscores a powerful truth: children with complex medical needs do best when surrounded by expert care, strong families, and a compassionate community. As Ellie begins her year as Connecticut’s CMN Champion, she represents every child whose life has been touched by our community’s generosity—and every future child who will need that same care, hope, and opportunity.