More Than We Were Told; Featuring Santi
"When Santi was born and I saw his face, all the worry and fear went away."
Research has shown that many families report receiving overwhelmingly negative information following a prenatal Down syndrome diagnosis, often focusing on limitations rather than possibilities. Yet the reality experienced by many of our crew families tells us a very different story… one filled with hills and valleys, love, and celebration.
That was certainly true for Santi's family.
Before Santi was born, his family learned that he had Down syndrome along with an Atrial Septal Defect (ASD). ASD is a congenital heart defect in which an opening remains in the wall separating the heart's two upper chambers. Because of this opening, blood can flow in a way that causes the heart and lungs to work harder than they should. In Santi's case, doctors discovered two openings that would eventually require surgical repair.
Like all parents navigating a prenatal diagnosis, Santi's family was faced with uncertainty and difficult conversations about the future. But everything changed the moment they met him!
"When Santi was born and I saw his face, all the worry and fear went away."
At just eight months old, he underwent open-heart surgery to repair the two holes in his heart. (As we are learning… if you've ever handed your baby over for surgery, you clearly know there aren't words big enough to describe that kind of courage from both the child and the parent.) While the surgery was a major milestone, his family says the real work began afterward.
Through Babies Can't Wait, Santi participated in physical therapy and occupational therapy, working on the foundational skills that would support his growth for years to come. He later added music classes and private speech sessions through GiGi's Playhouse Atlanta, giving him opportunities to strengthen his communication skills while connecting with peers.
Through the Down Syndrome Association of Atlanta, a valued partner of JJP, Santi's family found not only resources and support, but a community that understood their journey. Every milestone, big and small, became a victory worth celebrating.
Today, Santi's family describes him as their warrior, their hero, and one of their greatest teachers.
"We truly look up to him with how resilient he is."
No matter what challenges come his way, Santi continues to meet the world with determination, curiosity, and a smile that lights up every room… unless, as his family jokes, he's having one of his "toddler-teenager" moments. (I laughed at that one because every parent reading this immediately knows exactly what she means.) More than anything, Santi has changed the way his family views life. In a current world that feels rushed and chaotic, he has taught them to slow down, embrace each moment, and celebrate progress in all its forms.
"Santi has brought so much joy into our lives that we couldn't see our lives without him in it."
As their family begins a new chapter in Greenville, South Carolina (home to our ambassador, Liz Morgan), they are excited to build connections within the local disability community and become involved with the Down Syndrome Association of the Upstate.
Their greatest hope is simple: That the world will see Santi the way they do.
