Posted: February 25, 2026
A Heart Bigger Than the Moon – Cover of the 2026 Faces of Sunshine Calendar
Sadie will turn three in March. She was born in Johnson City, New York — a tiny girl with a big presence that her family would soon discover was even bigger than they imagined.
Shortly after birth, Sadie spent time in the NICU. During that stay, doctors discovered she had a ventricular septal defect (VSD), a small hole in her heart. Her parents also noticed something unusual — when she drank milk, it often came out of her nose. At the time, there were questions but not yet answers.
At two weeks old, Sadie’s newborn screening flagged her as potentially positive for Severe Combined Immunodeficiency (SCID). That result led her family to meet with an immunology team — a meeting that would change everything. While Sadie did not have SCID, she was diagnosed with 22q11.2 deletion syndrome at six weeks old. That same visit helped connect the dots: Sadie had an incompetent palate, which explained her feeding challenges.
Like many families receiving a 22q diagnosis, Sadie’s parents entered a world of new terminology, appointments, and unknowns. But alongside the medical complexities came clarity — and a plan.
From early on, Sadie began receiving Speech-Language Pathology services. For the first 18 months of her life, she also participated in Physical Therapy to address torticollis and mild physical delays. With support and early intervention, Sadie has continued to grow and thrive in her own unique way.
And what a way that is.
Sadie loves firetrucks, airplanes, the moon, and Bluey. She has a curiosity about the world that lights up every room she enters. But what truly sets her apart is her heart — a heart that, despite its early challenges, is overflowing with love. She shows it constantly through her affection for her family and her friends at school.
While Sadie experiences expressive speech delays, she is a remarkable communicator. With more than 150 American Sign Language signs, she has become what her family proudly calls a “rockstar communicator.” In fact, she has inspired many people around her to learn sign language so they can connect with her more fully. Her journey has not only strengthened her own voice but expanded the language of those who love her.
Her family shares an honest truth that resonates with many in the 22q community: grieving the “easy, carefree” life you once pictured is part of the process. But moving forward — day by day — opens the door to something just as beautiful. Every single day, Sadie shows her family how amazing she is. And part of what makes her who she is, is 22q.
Looking ahead, her parents hope for what all parents hope for — that Sadie will be happy, healthy, and able to pursue anything she sets her mind to. And if her first three years are any indication, there is very little that will stand in her way.
Sadie’s story is a reminder that children and adults with 22q11.2 deletion syndrome are extraordinary. Sharing their stories builds awareness. Awareness builds understanding. And understanding builds acceptance.
And that makes the world better — not just for Sadie — but for everyone. 💛
