Author Aditi Kantipuly Bridges Science and Art with Children’s Book

Aditi Kantipuly, a physician training in preventive medicine at a Canadian university, has created a children’s book titled Biscochito that addresses the complexities of a rare genetic disorder known as cerebral cavernous malformation (CCM). This condition, characterized by clusters of small blood vessels with abnormally thin walls in the brain and spinal cord, can lead to chronic headaches, seizures, and stroke-like symptoms. CCM is notably more prevalent in New Mexico than in other parts of the United States, with genealogical studies linking one variant of the disorder to early Spanish settlers in the region.

Kantipuly aims to make the understanding of CCM more accessible and less daunting through creative storytelling. She believes that “different mediums of storytelling — through art, music — help explain science.” In her book, a grandmother with CCM shares her experiences with her grandson while they bake biscochitos, the official state cookie of New Mexico. Each cookie recipe in the story offers insights into the disorder, presenting serious information in a family-friendly format.

Inspiration Behind the Story

The journey to create Biscochito began when Kantipuly sought funding from the Rare Disease Diversity Coalition, an organization focused on addressing challenges faced by underserved populations with rare diseases. This led her to collaborate with the Alliance to Cure Cavernous Malformation and explore the history of CCM in New Mexico.

The idea took shape when Kantipuly discovered biscochitos’ cultural significance in New Mexico. “That connection allowed me to tie CCM to something culturally important,” she explained. The book’s narrative was shaped through extensive conversations with individuals living with CCM, ensuring their voices and experiences were reflected accurately. “The way that the narrative evolved was through conversations with the support group and myself,” Kantipuly noted.

Impact on the Community

Published in 2023, Biscochito has already proven to be a valuable resource for families affected by CCM. The New Mexico Public Education Department played a pivotal role in distributing copies of the book to 50 elementary schools across the state, according to Anne Marlow-Geter, manager of the agency’s Safe and Healthy Schools Bureau. This initiative aims to foster understanding and support for children dealing with rare diseases.

One young reader, Sakura Tafoya, an 8-year-old CCM patient from Santa Fe, has found the book particularly useful. Her father, Jared Tafoya, shared that they own two copies—one for home and another for the school library. Last year, Sakura read the story to her second-grade class, making a significant impact on her peers. “The whole thing behind the book is, CCM is like a legacy,” Jared Tafoya said. “CCM is like a legacy—like a good recipe for biscochitos.”

Through Biscochito, Kantipuly not only raises awareness about a rare genetic disorder but also fosters a sense of community and understanding. This innovative approach highlights the power of storytelling in bridging the gap between complex medical information and everyday life, making it an essential resource for families navigating the challenges of CCM.