Author Aditi Kantipuly Crafts Children’s Book on Rare Genetic Disorder

Aditi Kantipuly, a physician in training at a Canadian university, has merged art and science through her recent children’s book, Biscochito. This engaging narrative introduces readers to cerebral cavernous malformation (CCM), a rare genetic condition that affects blood vessels in the brain and spinal cord. The book aims to educate young readers about the disorder while providing a comforting and accessible format for families dealing with its complexities.

CCM often leads to chronic headaches, seizures, and stroke-like symptoms. It is particularly prevalent in New Mexico, where genealogists have traced one variation of the condition to early Spanish settlers. While no cure currently exists, research efforts, including those from the University of New Mexico Health Sciences Center, continue to seek the best treatment options for those affected by CCM.

Kantipuly’s unique approach to raising awareness about this condition was informed by her collaboration with a group of CCM patients from New Mexico. In Biscochito, she 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 gateway to important information about the disorder.

“The goal was to present information about a rare genetic condition — which can be scary and overwhelming — in an accessible and family-friendly format,” Kantipuly explained. This perspective aligns with her belief that children’s books can function as “gateways to knowledge.”

The inspiration for Biscochito emerged during her application for funding from the Rare Disease Diversity Coalition, an organization focused on addressing the challenges faced by underserved populations affected by rare diseases. This connection led her to collaborate with the Alliance to Cure Cavernous Malformation, making the project a natural fit for her interests and expertise.

Kantipuly was particularly drawn to the cultural significance of biscochitos in New Mexico, which enriched the narrative. “The cookie connection allowed me to connect CCM to a cultural touchpoint of the state,” she noted.

Involving individuals with CCM in the creation of the book was a priority for Kantipuly. She sought feedback on the story’s content and consulted on character development, ensuring the narrative evolved through collaborative discussions. “The way that the narrative evolved was through conversations with the support group,” she said, emphasizing the importance of community input in the writing process.

To further enhance the book’s reach, Kantipuly collaborated with the New Mexico Public Education Department to distribute copies across the state. According to Anne Marlow-Geter, manager of the agency’s Safe and Healthy Schools Bureau, the department provided the book to 50 elementary schools, ensuring it reaches young readers and their families.

The impact of Biscochito has already been felt by families like that of 8-year-old Sakura Tafoya, a CCM patient from Santa Fe. Her father, Jared Tafoya, shared that they own 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, demonstrating the book’s potential as an educational tool.

“The whole thing behind the book is, CCM is like a legacy,” Tafoya remarked. “It’s like a good recipe for biscochitos.” Through Biscochito, Kantipuly not only informs young readers about a rare genetic disorder but also fosters a sense of community and understanding surrounding CCM, transforming a complex medical condition into a relatable family story.