No mother should navigate it alone.

Sa’rye entered the world at just 23 weeks, weighing only 1 pound, 10 ounces. During her time in the NICU, she experienced bilateral brain bleeds—a grade three bleed on one side and a grade four bleed on the other—which led to hydrocephalus. She also battled meningitis, endured pneumonia several times, and underwent three brain surgeries before she ever came home.

Our NICU journey unfolded during the height of the COVID-19 pandemic. Hospital restrictions allowed only one adult to be with each child, which meant I had to navigate one of the most frightening experiences of my life largely alone. My family could not be there beside me, my mother could not step in and speak for me, and the isolation was overwhelming.

But somewhere within that isolation, the advocate in me was activated.

I realized that I had to ask difficult questions, understand unfamiliar medical terminology, conduct my own research, and learn how to speak confidently on my daughter’s behalf. I could no longer wait for someone else to tell me what to do or assume that someone else would make sure every possibility had been explored. Sa’rye needed me to become informed, courageous, and unafraid to use my voice.

That experience also gave me a deeper understanding of vulnerability. I began asking myself: What if I did not have health insurance? What if I did not have access to people who could answer my questions? What if I faced a language barrier, could not understand the information being presented to me, or did not have the technology and resources to research things as quickly as they were happening?

I recognized that my ability to communicate confidently with doctors and nurses affected how I navigated the system—but not every parent enters these spaces with the same access, information, support, or confidence. Too many families are trying to secure basic healthcare while facing systems that are already difficult to understand. Those challenges become even greater for mothers and families experiencing the NICU.

When Sa’rye finally graduated from the NICU, she came home with oxygen and a feeding tube. That was when the grit truly kicked in. Leaving the hospital did not mean our journey was over—it meant a new chapter of caregiving, learning, and advocacy had begun.

Even today, it can be difficult to find people who fully understand what it means to watch your child fight for life in the NICU and then bring that child home with complex needs. During our journey, I often wondered: Who can I ask? Who can I talk to? Where are the people who understand how scared, nervous, and uncertain I feel?

Those questions revealed a tremendous gap—not only in healthcare, but also in the emotional, educational, and practical support available to women, children, and NICU families.

The Sa’rye Kennedy Foundation was created to stand in that gap.

It was founded for mothers who feel alone, parents trying to understand complicated medical and educational systems, and families who may not have access to the information or support they need. Through trusted resources, education, advocacy, encouragement, and genuine human connection, we want families to have a place where they can ask questions, talk through their fears, and feel understood.

This foundation represents the support system I wish I had when our journey began. My hope is that our experience can touch lives, strengthen families, and remind every parent facing an uncertain road that they do not have to navigate it alone.

— Shalonda Keyes, Founder