02/28/2026
Rare diseases are defined as affecting less than 200,000 people.
Some forms of childhood cancer are more common than others, but each of the individual types of childhood cancer is recognized as rare under this definition.
For our family, our rare disease is an ultra rare form of childhood cancer.
Infant leukemia affects approximately 90 babies (12mo or younger) every year. Almost every case comes with an unfortunate gene mutation, KMT2A. This mutation, commonly referred to as MLL-rearranged, makes the cancers it affects very aggressive, hard to treat and delivering poor prognoses.
Itโs often hard to reconcile how Callahan beat the odds, especially combined with being diagnosed so incredibly young at 19 hours old.
This experience and reality drives our resolve to advocate not just for his rare disease, but for all childhood cancers.
On this Rare Disease Day, we are grateful to share our rare disease and to have the opportunity to impact research that works to improve not only survival rates, but long-term impacts of outdated, toxic solutions.