Author Aditi Kantipuly Tackles Rare Disorder in Children’s Book

Aditi Kantipuly has creatively bridged the gap between science and storytelling with her new children’s book, Biscochito, which addresses a rare genetic disorder known as cerebral cavernous malformation (CCM). This condition, characterized by clusters of abnormal blood vessels in the brain and spinal cord, can lead to chronic headaches, seizures, and stroke-like symptoms. The book aims to provide an accessible and engaging way to educate young readers and their families about CCM, a condition that affects many in New Mexico.

Kantipuly, a physician currently training in preventive medicine at a Canadian university, believes in using various storytelling mediums to enhance understanding of complex subjects. “I like to use different mediums of storytelling — through art, music — to explain science,” she explained. Her approach to writing Biscochito was informed by consultations with a support group of CCM patients from New Mexico, ensuring the narrative resonated with those directly affected by the disorder.

Connecting Culture and Education

New Mexico has a notably higher prevalence of CCM compared to other regions in the United States. Researchers at the University of New Mexico Health Sciences Center are actively investigating potential treatments and sharing their findings with families impacted by the condition. Kantipuly recognized the need for a resource that presents this information in a child-friendly format.

Published in 2023, Biscochito tells the story of a grandmother with CCM who shares her experiences while baking biscochitos, the official state cookie of New Mexico, with her grandson. Each cookie serves as a vehicle for imparting knowledge about the condition, making the material relatable and engaging. As Kantipuly stated, “Children’s books serve as gateways to knowledge.” The goal was to transform a potentially overwhelming subject into a format that families could easily discuss and understand.

The inspiration for the book grew when Kantipuly learned about the cultural significance of biscochitos in New Mexico. This connection allowed her to weave together the state’s heritage with scientific education, creating a narrative that is both culturally relevant and informative.

Community Involvement and Impact

Kantipuly’s project gained momentum through her application for funding from the Rare Disease Diversity Coalition, which focuses on addressing the unique challenges faced by underserved populations with rare diseases. This collaboration led to a partnership with the Alliance to Cure Cavernous Malformation, further solidifying the book’s foundation in community engagement.

The writing process was collaborative, with feedback from CCM patients guiding the development of the story. “The way that the narrative evolved was through conversations with the support group,” Kantipuly noted. “I proposed ideas, and they provided feedback, refining it. That’s how the book was born.”

The New Mexico Public Education Department recognized the value of Biscochito and 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 foster awareness and understanding of CCM among young students.

The impact of the book is evident in the experience of 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. 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,” said Jared Tafoya. “CCM is like a legacy—like a good recipe for biscochitos.”

Through Biscochito, Kantipuly has not only created a resource for families affected by a rare disorder but has also highlighted the importance of community and cultural connections in understanding complex medical issues.