The story of Maison
Maison’s Voyage: Navigating the Unknown with Strength and Hope
At just 10 years old, Maison Marksbury has faced more medical challenges than most will in a lifetime. His journey with chronic severe neutropenia and bone marrow failure has been one of uncertainty, resilience, and unwavering courage. Diagnosed in July 2021, Maison has undergone eight bone marrow biopsies, each one a critical step in understanding his rare condition as doctors work to find answers in uncharted medical territory.
Maison’s condition affects his body’s ability to fight infections, making even minor illnesses a serious threat. Everyday activities that most children take for granted—like playing outdoors—require extra caution. To protect his health, Maison must avoid exposure to dirt and limit his time outside, as even small environmental factors can pose a serious risk. Despite these challenges, he continues to embrace life with curiosity, strength, and a love for learning.
His medical team spans some of the most respected institutions in the country, including Boston Children’s Hospital, Cincinnati Children’s Hospital, Norton Children’s, and the National Institutes of Health (NIH), all collaborating to study his rare and complex case. While his future remains uncertain, what remains clear is Maison’s determination and the urgent need for continued research and awareness for rare diseases like his.
Why Rare Disease Awareness Matters
With Rare Disease Day on February 28, 2025, we are sharing Maison’s story to shine a light on the millions of children and families affected by rare conditions. Bone marrow failure disorders are poorly understood and underfunded, leaving families like ours with more questions than answers. Increased awareness and funding for research are critical—not just for Maison, but for every child navigating a rare diagnosis.