Full Breakdown
Raising Awareness for Infantile Neuroaxonal Dystrophy through Literature
4/3/2026, 10:58:53 AM
The Duplechain Family's Mission
Charles and Curtshandra Duplechain, residents of Baton Rouge, Louisiana, are raising awareness for Infantile Neuroaxonal Dystrophy (INAD), a rare genetic disorder affecting their two daughters, Jade, 10, and Ivory, 6. INAD is characterized by a buildup of iron in the brain, leading to severe developmental regression, including loss of movement and speech. The condition is extremely rare, impacting approximately one in a million children, with symptoms typically manifesting before the age of three.
In October 2025, the Duplechains published a children's book titled *The Super Sisters And Their Rare Pet Zebra*, aimed at educating others about INAD. The book not only narrates the experiences of Jade and Ivory but also seeks to foster understanding and kindness towards those with rare diseases.
The Book's Content and Purpose
The narrative follows the adventures of the "Super Sisters" and their unique pet zebra, serving as a tool to explain INAD to children. Emery, the couple's 8-year-old daughter who does not have INAD, contributed illustrations to the book, expressing her desire for others to recognize the similarities between her sisters and their peers. “I want them to know how they’re not so different to other people,” Emery stated.
Curtshandra Duplechain emphasized that the book shares the challenges of living with a rare disease while also providing hope. She noted, “It’s basically just sharing different aspects of what it’s like to live with a rare disease... but it’s also teaching how you can still be kind when you encounter them.”
The Journey to Diagnosis and Advocacy
The Duplechain family's journey to understanding their daughters' condition was fraught with uncertainty. It took years of searching for answers before genetic testing confirmed the diagnosis of INAD. Charles Duplechain described the emotional toll of not knowing, stating, “As a parent, you’re confused, you feel helpless... it’s the not knowing that’s very difficult because there’s no direction.”
In addition to raising awareness through their book, the Duplechains are actively involved in fundraising for gene therapy trials, which they view as a promising avenue for improving the quality of life for children with INAD. “There’s a lot of headway and progress being made in gene therapy... but those things do take money,” Charles noted.
Official Statements & Responses
The Duplechains have made it their mission to help other families navigate the challenges associated with rare genetic disorders. They aim to empower their daughters, ensuring they do not feel limited by their disabilities. Curtshandra stated, “We never wanna limit our girls... they can do whatever they put their mind to.”
Verbatim Quotes
- “It’s basically just sharing different aspects of what it’s like to live with a rare disease, some of the difficulties they have, but it's also giving hope,” — Curtshandra Duplechain, Author
- “As a parent, you’re confused, you feel helpless in some ways because you don’t know, and I think it’s the not knowing that’s very difficult because there’s no direction,” — Charles Duplechain, Father
- “I want them to know how they’re not so different to other people,” — Emery Duplechain, Sister
The Duplechain family's efforts highlight the importance of awareness and understanding in the face of rare diseases, aiming to inspire kindness and support within their community.
