As a young mother of a child living with Sickle Cell Disease, I was unaware at that time of the educational accommodations to which my daughter Dream was entitled.

When Dream entered school, my instinct led me to call a meeting with all of the educators who interacted with her daily. I wanted to ensure they understood her medical diagnosis. At that meeting, I shared information about Sickle Cell Disease and requested that it be added to her student file for future reference.

One day in kindergarten, her teacher, Ms. Patterson, noticed that Dream was coloring with her left hand instead of her dominant right hand. Because Ms. Patterson had attended that meeting and reviewed the information I provided, she understood Dream’s baseline behavior and recognized that something was wrong. She sent Dream to the nurse. When the nurse evaluated her and sent her back to class twice, Ms. Patterson insisted that an ambulance be called.

I received a call informing me that my five-year-old daughter was on her way to the hospital. I was confused and shaken in that moment, but to this day, I remain deeply grateful for that decision.

At the hospital, Dream was calm and unbothered, even after riding in an ambulance. She was taken to a facility where her hematologist had privileges and was seen immediately. Bloodwork was conducted, and shortly after, we were told she needed emergency surgery because she was actively having a stroke.

To this day, I am grateful to Ms. Patterson for her vigilance and attentiveness to Dream’s normal. She noticed what others might have overlooked. Because she listened and paid attention, her actions helped prevent what could have been a far more devastating outcome.

Dream passed away on August 21, 2021, at the age of 16 due to complications from a stem cell transplant. Throughout her life, she overcame extraordinary challenges. She recovered from that early stroke, underwent a stem cell transplant that cured her Sickle Cell Disease, and fought osteosarcoma. Along her journey, she also became a changemaker. Her advocacy led to the passage of The Dream Law in New York State on December 10, 2019.

Today, as a graduate of legal studies, a paralegal, and an advocate for children like my daughter, I recognize a critical gap. When I sat in that room with educators and shared Dream’s medical condition, not one person informed me that I could request a Committee on Special Education meeting or secure a 504 Plan for her. That omission matters. A 504 Plan is a federal civil rights protection that ensures children with disabilities receive the support they need to access their education.

That realization led to the introduction of Senate Bill S4903A, the NYS Shepherd Patterson Notification Act of 2026, currently in the Senate Health Committee.

This legislation directs the creation of a standardized notice to be provided by physicians to parents and guardians of minors diagnosed with medical conditions that may cause a disability. The notice will inform families that their child may be entitled to a free and appropriate public education under Section 504 of the Rehabilitation Act of 1973 and encourage them to engage their school in securing appropriate accommodations.

This is about closing an information gap that families should never have to navigate alone. It ensures that what I had to learn through experience and advocacy is instead clearly communicated from the very beginning, when it matters most.