Louisiana parents use children’s book to raise awareness of INAD
Two Louisiana parents published a children’s book to raise awareness of Infantile Neuroaxonal Dystrophy, a rare disorder affecting two of their daughters. They are also helping raise money for a gene therapy trial.
Two Louisiana parents are hoping that their new children’s book will help raise awareness for the rare genetic condition that two of their children are living with. Charles and Curtshandra Duplechain’s oldest daughter, 10-year-old Jade, and youngest, 6-year-old Ivory, have both been diagnosed with Infantile Neuroaxonal Dystrophy, or INAD, while their sister Emery, 8, has not.
INAD is a brain condition that affects the nervous system in young children, caused by excess iron buildup in the brain, and can lead to rapid developmental regression, with children losing the ability to move or speak. It is extremely rare, affecting only about one in a million children, according to the National Institute of Neurological Disorders and Stroke, and symptoms often begin showing before 3 years of age.
In October 2025, the parents of three, who live in Baton Rouge, La., published a book about their daughters’ experience living with INAD: The Super Sisters And Their Rare Pet Zebra. The book’s title is a reference to an adage commonly used by doctors: “When you hear hoofbeats, think horses not zebras.” In this usage, “zebras” refer to very rare conditions like INAD.
The story follows the adventures of the “Super Sisters” and their rare pet zebra, and helps explain INAD to other children. Jade and Ivory’s sister, Emery, contributed her artwork to the book and said she wants to help other people understand her sisters.
Along with publishing the book, the Duplechains are also helping raise money for a gene therapy trial. According to the Inadcure Foundation, a gene therapy trial is “currently the best hope for children afflicted with INAD.”
The couple said the book shares different aspects of what it is like to live with a rare disease, some of the difficulties the girls have, and also gives hope. They said there is a lot of headway and progress being made in gene therapy and coming up with solutions that can help elevate a child’s quality of life.