Author Aditi Kantipuly Brings Awareness to CCM Through Children’s Book

Aditi Kantipuly, a physician in training at a Canadian university, has combined her medical expertise and creative storytelling to raise awareness about cerebral cavernous malformation (CCM) through a children’s book titled Biscochito. This engaging narrative aims to educate young readers about a rare genetic disorder in a format that is both accessible and family-friendly.

Cerebral cavernous malformation is a condition characterized by clusters of small blood vessels with abnormally thin walls, often leading to chronic headaches, seizures, and stroke-like symptoms. Studies indicate that CCM is more prevalent in New Mexico than in other regions of the United States, with genealogical research linking one variant of the disorder to early Spanish settlers of the area. Despite the absence of a cure, ongoing research at institutions like the University of New Mexico Health Sciences Center seeks to improve treatment options for families affected by this challenging condition.

Kantipuly’s approach to spreading information about CCM is unique. In 2023, she collaborated with a group of CCM patients from New Mexico to write Biscochito, a story about a grandmother sharing her experiences with her grandson while they bake biscochitos, the official state cookie of New Mexico. Each cookie in the narrative serves as a vehicle for delivering information about CCM, transforming a potentially daunting topic into an engaging story for children.

“The goal with Biscochito was to present information about a rare genetic condition in an accessible format,” Kantipuly noted. “Children’s books serve as gateways to knowledge, especially when paired with something complex.”

The idea for the book emerged after Kantipuly applied for funding through the Rare Disease Diversity Coalition, an organization focused on assisting underserved populations facing rare diseases. This connection led to collaboration with the Alliance to Cure Cavernous Malformation, ultimately inspiring Kantipuly to delve into the history of CCM in New Mexico.

The cultural significance of biscochitos played a vital role in shaping the narrative. “Biscochitos allowed me to connect CCM to a cultural touchpoint of the state,” she explained. Kantipuly involved individuals with CCM throughout the creative process, seeking feedback on both the story and character development. “The narrative evolved through conversations with the support group,” she added. “That’s how the book was born.”

In an effort to maximize the book’s reach, Kantipuly partnered with the New Mexico Public Education Department, which distributed copies 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 spread awareness and understanding of CCM among younger audiences.

The impact of Biscochito has been felt in families like that of Sakura Tafoya, an 8-year-old CCM patient from Santa Fe. Her father, Jared Tafoya, shared that they have two copies of the book—one for home and one for the school library. Last year, Sakura read the story to her second-grade class, helping to demystify the condition for her peers. “The whole thing behind the book is, CCM is like a legacy,” Jared Tafoya reflected. “It’s like a good recipe for biscochitos.”

Kantipuly’s innovative approach not only sheds light on a complex medical condition but also fosters a sense of understanding and community among those affected. Through Biscochito, she provides an invaluable resource that bridges the gap between scientific information and everyday life, making a lasting impact on both children and families dealing with CCM.