How One Cleveland Family Rallied Their Community for CDKL5 Research

Anthony and Michelle are raising their four children in a lively, close‑knit home just outside Cleveland, Ohio. Their days are filled with the energy of their three older kids—Aubrey (11) and nine‑year‑old twins, Claire and Luca—who love hiking, playing sports year‑round, and soaking up time together as a family.

Their world grew in a profound way with the arrival of their youngest daughter, Mallory, on January 21, 2024. Early on, Mallory faced significant health challenges, including slow weight gain and severe reflux. At just 10 weeks old, she experienced her first seizure, setting off months of hospitalizations and testing as her medical team searched for answers. At four months old, Mallory was diagnosed with CDKL5 Deficiency Disorder at University Hospitals, giving the family both a name for what they were facing and a new, unfamiliar path forward.

In the wake of her diagnosis, Anthony and Michelle began searching for expert guidance and reliable information about CDKL5. Their search led them to the International Foundation for CDKL5 Research (IFCR) website, where they found education, community, and direction for next steps in care. Through IFCR, the family was connected with specialists at the Cleveland Clinic and quickly built a dedicated team of 15 doctors and therapists to support Mallory’s complex medical and developmental needs.

About a year after Mallory’s diagnosis, Michelle accepted a part‑time, work‑from‑home position with Magis Advisory Group. As part of her onboarding, she received a copy of the book Because I Said I Would, which focuses on the power of keeping promises that make the world better. The book became a turning point. Inspired by its message, and determined to transform her grief into action, Michelle made a promise: she would organize a major fundraiser for IFCR in honor of Mallory and all children living with CDKL5.

In just four months, the family planned and hosted a silent dinner auction that brought together 250 people from their community. The event was a powerful evening of healing, connection, and hope, as Anthony and Michelle publicly shared Mallory’s story and invited others to join them in supporting CDKL5 research and resources. Together with their supporters, they raised more than $75,000 for IFCR, a remarkable testament to the love surrounding their family and the community’s desire to help change the future for children like Mallory.

Day by day, the family continues to navigate the challenges of CDKL5 Deficiency Disorder with strength, unity, and deep love. Their journey is still unfolding, but they are already transforming personal hardship into a force for good—raising awareness, funding research, and reminding other families that they are not alone in the CDKL5 community.