When Ezra Marie was diagnosed with CDKL5 Deficiency Disorder at just 6 1/2 months old, her parents were suddenly thrust into a world of complex medical decisions, constant appointments, and overwhelming fear. Their oldest child was only 14 months older than Ezra, and those early months became a blur of trips to specialists in Boston, repeated stays at the children’s hospital in Atlanta, and the relentless uncertainty that comes with a rare disease diagnosis.

During one of Ezra’s hospital admissions, the family met Dr. Helen Leonard, a leading CDKL5 researcher. In a long, compassionate conversation, she explained Ezra’s specific mutation in language they could understand and, more importantly, offered tangible hope for the future. That moment of clarity and reassurance became a turning point for the family, helping them feel less alone and more equipped to face what lay ahead.

A year later, in June 2024, the family traveled to the IFCR Family Conference in Ohio. Walking into that space felt like stepping into an extended family they did not know they had. They were finally able to hug the parents who had been supporting them through screens for months; people who understood their fears and grief without needing a single word of explanation. The sense of belonging and community, of being “held” by others who truly understood CDKL5, was both powerful and healing.

As their relationship with IFCR grew, Ezra’s parents felt a deep desire to give back to the organization that had carried them through their darkest days. In June 2025, during CDKL5 Awareness Month, they hosted the first annual Ezra’s Bingo Bash, a community event created to honor their daughter and raise awareness and funds for children living with CDKL5. Seeing friends, neighbors, and extended community members show up cheering for Ezra, learning about CDKL5, and fighting for better futures for children like her was an experience they will never forget.

Today, the family describes IFCR as an incredible gift. The foundation has provided practical resources, reliable information, and connections to expert care, while also creating lifelong friendships and a sense of shared purpose. IFCR has walked alongside them through emergency hospital stays and difficult decisions, and it has celebrated with them in those rare and precious moments of progress and joy.

Ezra’s parents remain deeply committed to pouring their hearts back into the CDKL5 community. Every day, they choose to keep fighting, fundraising, and sharing their story—not only for Ezra, but for every child and family living with CDKL5 around the world.