Author Aditi Kantipuly Explores Rare Disorder in Children’s Book

Aditi Kantipuly, a physician currently training in preventive medicine in Canada, has creatively combined her passion for science and storytelling through her new children’s book, Biscochito. The book addresses cerebral cavernous malformation (CCM), a rare genetic condition that affects small blood vessels in the brain and spinal cord, leading to severe symptoms such as chronic headaches, seizures, and stroke-like incidents.

CCM is particularly prevalent in New Mexico, where genealogical studies trace a specific genetic mutation to the state’s early Spanish settlers. While there is currently no cure for CCM, ongoing research at institutions like the University of New Mexico Health Sciences Center aims to improve treatment options and share information with affected families.

Kantipuly’s unique approach to educating the public about CCM involved working closely with patients from New Mexico. Biscochito, published in 2023, tells the story of a grandmother with CCM who shares her experiences with her grandson while they bake biscochitos, the official state cookie of New Mexico. Each cookie serves as a metaphorical nugget of information about the disorder. Kantipuly emphasized that children’s books can act as “gateways to knowledge,” making complex subjects more accessible and less intimidating.

The inspiration for Biscochito came when Kantipuly applied for funding from the Rare Disease Diversity Coalition. This organization focuses on addressing the unique challenges faced by underserved populations affected by rare diseases. Through the coalition, she connected with the Alliance to Cure Cavernous Malformation and embarked on a project that resonated with her personal and professional interests.

In her research, Kantipuly discovered the cultural significance of biscochitos in New Mexico, which helped her weave together the themes of CCM and local heritage. She actively involved individuals with CCM in the writing process, ensuring that their insights shaped the narrative. “The way that the narrative evolved was through conversations with the support group and myself,” she explained, highlighting the collaborative nature of the project.

To further extend the book’s reach, Kantipuly partnered with the New Mexico Public Education Department, which distributed copies of Biscochito to 50 elementary schools throughout the state. Anne Marlow-Geter, manager of the agency’s Safe and Healthy Schools Bureau, confirmed the initiative’s success in promoting awareness about the condition among young readers.

The book has proven to be a valuable resource for families affected by CCM, including that of Sakura Tafoya, an 8-year-old patient from Santa Fe. Her father, Jared Tafoya, shared that they own two copies of the book—one for home and another for the school library. Sakura even read the story to her second-grade class, which has helped her peers understand her condition better.

“The whole thing behind the book is, CCM is like a legacy,” Jared Tafoya remarked, illustrating the personal connection families have with the disorder. Kantipuly’s innovative storytelling not only educates but also fosters a sense of community among those affected by rare conditions like CCM, making Biscochito a significant contribution to both literature and public health awareness.