Author Bridges Science and Art with Children’s Book on CCM

Aditi Kantipuly, a physician training in preventive medicine in Canada, has combined her medical expertise and artistic creativity to raise awareness about cerebral cavernous malformation (CCM) through a children’s book titled Biscochito. This unique approach aims to educate families about a rare genetic disorder while engaging young readers in a culturally relevant narrative.

Cerebral cavernous malformation is characterized by clusters of small blood vessels with abnormally thin walls, which can lead to chronic headaches, seizures, and stroke-like symptoms. The condition is notably more prevalent in New Mexico than in other parts of the United States. Genealogical studies have traced one variant of CCM to early Spanish settlers in the region. While there is currently no cure for the disorder, ongoing research, including efforts from the University of New Mexico Health Sciences Center, continues to explore effective treatments.

Kantipuly’s journey to create Biscochito began with an application for funding from the Rare Disease Diversity Coalition, an organization focused on addressing the challenges faced by underserved populations with rare diseases. This initiative connected her with the Alliance to Cure Cavernous Malformation and provided an opportunity to delve into the history of CCM in New Mexico. The project resonated with Kantipuly, particularly after discovering that biscochitos are the official state cookie of New Mexico.

Connecting Culture and Education

The decision to incorporate biscochitos into the narrative served as a cultural touchpoint that enriched the storytelling process. “It was important for me to connect CCM to something that is part of New Mexico’s culture,” Kantipuly shared. She involved individuals affected by CCM throughout the writing process, gathering feedback on the story and characters from a support group of patients.

Kantipuly emphasized the collaborative nature of the book’s development. “The way that the narrative evolved was through conversations with the support group. I proposed ideas, and they provided feedback, which refined the story,” she explained. This collaborative effort ensured that Biscochito accurately represented the experiences of those living with the condition.

To further enhance its reach, Kantipuly collaborated with the New Mexico Public Education Department, which distributed copies of the book to 50 elementary schools across the state. Anne Marlow-Geter, manager of the agency’s Safe and Healthy Schools Bureau, confirmed the initiative’s goal to provide educational resources to children and families.

A Lifeline for Families

The impact of Biscochito has been particularly significant for families like that of Sakura Tafoya, an 8-year-old CCM patient from Santa Fe. Her father, Jared Tafoya, noted that they own two copies of the book—one at home and one for the school library. Sakura read the story to her classmates last year, helping to demystify the condition for her peers.

“The whole thing behind the book is that CCM is like a legacy,” Jared Tafoya remarked. “It’s like a good recipe for biscochitos.” Through this engaging narrative, Kantipuly has not only provided a resource for education but has also fostered a sense of community and understanding around a challenging medical condition.

By blending science, art, and culture, Biscochito stands as a testament to the power of storytelling in making complex medical information accessible and relatable to children and families.