Our mission is to provide hospitals, birthing centers, and prenatal clinics with resources that can be immediately distributed to parents who have just learned that their child has a diagnosis of Down syndrome.
Our resources are aimed to provide education and encouragement during the initial days of navigating a diagnosis.
In May 2020, we welcomed our daughter, Sammie, into the world.
Prior to her arrival, we had no indication that she would be born with Down syndrome or a number of health concerns. In a matter of minutes after her arrival, we went from believing we would be taking home a healthy, typically developing baby to learning our newborn had a genetic disorder and some alarming health concerns. It was painful to hear, painful to process, and painful to accept. What should have been a joy-filled time became overshadowed by an overwhelming number of questions and fears.
Though we were surrounded by caring and encouraging doctors, nurses, and staff, we were sent home with minimal resources — a printed-out paper defining “Down syndrome” — and nearly no indication of what to do next.
The questions started pouring in.
What do we do now? Where do we go from here? Who do I call? What appointments do I need to make? What is life going to look like going forward? Is Sammie going to be okay?
Eventually, we were able to find answers to our questions, make connections with other families in the Down syndrome community, and begin to dream about our future with Sammie rather than worry.
But what became clear was that so many others within the Down syndrome community also left the prenatal clinic, hospital, or birthing center not knowing what steps to take next while also feeling overwhelmed with questions and fears similar to our own.
We’ve also spoken with a number of doctors and nurses who have stated that they often feel ill-equipped to provide adequate resources and avenues of support to families receiving this news.
As a result, we were inspired to start Rising Kites.
Rising Kites provides bags to hospitals, birthing centers, and prenatal clinics that can be distributed immediately to parents who are just learning that their child was diagnosed with Down syndrome. It is our hope that by providing our bags directly to these facilities, families who are new to the Down syndrome community will receive immediate education, resources, and encouragement as they navigate a new and unexpected road.