Age 9, 4th Grade – Sellersburg, IN
Welcome to the Junior Ambassador team, Maison!! We are excited to have you be a part of the team as an advocate for kids with neutropenia as well as with other childhood illnesses, raising awareness about Neutropenia, and raising funds to support your local hospitals!
Maison’s mom, Tracy, shares his story:
“Maison was diagnosed with a rare blood condition known as Neutropenia at the age of 6. His treatment involves multiple weekly blood draws and frequent ER visits due to fevers. To monitor changes in his bone marrow, he undergoes surveillance bone marrow biopsies every 3 months. He has had 7 of these procedures so far, with the next scheduled for October 2024. We travel to Bethesda, Maryland, for research at the National Institutes of Health as part of the NIAID Primary Immune Deficiency (PID) program, and to Cincinnati, OH, for appointments with his hematologist. We will also soon be traveling to Boston, MA, to consult for his next Biopsy with Akiki Shimamura, MD who focuses on neutropenia and Bone Marrow Failure. Maison and his mom remain positive and, alongside the neutropenia community and with all of the research efforts, are dedicated to working towards discovering a cure.”
Maison has shared his personal story with his classmates on Rare Disease Day (2/29/24). He produced a video for the Kosair for Kids Foundation to raise awareness about neutropenia February 2024. Maison has also attended a community networking breakfast, where he spoke about is experiences with neutropenia to various businesses, aiming to both raise awareness and collect donations for the Kosair for Kids Foundation June 2024. Additionally, Maison made a significant impact by raising funds for the Norton Foundation to support children at Norton Hospital. He was also involved in the ribbon-cutting ceremony for a newly opened Drake’s Restaurant in Jeffersonville, IN March 2023—a local business who has been supportive of Maison on his neutropenia journey.