Aditi Kantipuly resists the siloes that separate science and art.
A physician now training in preventive medicine at a Canadian university, Kantipuly said, “I like to use different mediums of storytelling — through art, music — to explain science.”
Kantipuly recently applied that talent to cerebral cavernous malformation, a rare, often genetic condition in which small blood vessels with abnormally thin walls cluster together in the brain and spinal cord, causing chronic headaches, seizures and stroke-like symptoms.
CCM is more common in New Mexico than elsewhere in the U.S., with genealogists tracing a genetic mutation causing one variation of the disorder to early Spanish settlers in the state.
Though CCM has no cure, researchers — including some at the University of New Mexico Health Sciences Center — continue to search for the best treatments for CCM and share their findings with families affected by the condition.
But Kantipuly took a distinctive approach to spreading information about the condition: She wrote a children’s book.
Biscochito, which Kantipuly wrote in consultation with a group of CCM patients from New Mexico, follows the story of a grandmother with CCM sharing her experiences with her grandson while they bake biscochitos. Each cookie offers a tidbit of information about the condition.
Children’s books serve as “gateways to knowledge,” Kantipuly said. The goal with Biscochito, published in 2023, was to present information about a rare genetic condition — which can be scary and overwhelming — in an accessible and family-friendly format.
“That format can work well when you’re trying to pair it with something really complex,” she said.
For Kantipuly, the process of writing Biscochito began when she applied for funding through the Rare Disease Diversity Coalition, an organization dedicated to addressing the unique challenges faced by underserved populations with rare diseases.
The coalition connected Kantipuly with the Alliance to Cure Cavernous Malformation and a proposed project in New Mexico. It felt like a “perfect fit,” Kantipuly said, and she started researching the history of the genetic condition in the state.
But the story sprang to life when Kantipuly learned biscochitos are the official state cookie of New Mexico. The cookie connection allowed Kantipuly to connect CCM to a cultural touchpoint of the state — something she said was important to her in the writing process.
Kantipuly also worked to ensure people with CCM were involved in creating the book — from providing feedback on the text of the story to consulting on the characters.
“The way that the narrative evolved was through conversations with the support group and myself — me proposing an idea, them giving me feedback, refining it. … That’s how the book was born,” Kantipuly said.
The author also worked with the New Mexico Public Education Department to deliver the book to school libraries across the state. The department distributed copies of the story to 50 elementary schools, said Anne Marlow-Geter, manager of the agency’s Safe and Healthy Schools Bureau.
The book has served as a useful tool for Sakura Tafoya, an 8-year-old CCM patient from Santa Fe, and her family.
They have two copies of Biscochito — one for home and one for the school library, said Jared Tafoya, Sakura’s dad. Sakura read the story to her class last year, when she was in second grade.
“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.”