In Baton Rouge, Louisiana, Charles and Curtshandra Duplechain are shining a light on a rare genetic disorder that affects their family. Their two daughters, ten-year-old Jade and six-year-old Ivory, have been diagnosed with Infantile Neuroaxonal Dystrophy (INAD), a condition that poses significant challenges to those living with it. In response to their daughters’ diagnosis, the Duplechains have published a children’s book titled *The Super Sisters and Their Rare Pet Zebra*, aimed at increasing awareness about this uncommon affliction.
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INAD is a neurological condition that significantly impacts children, characterised by an accumulation of iron in the brain. It is strikingly rare, with approximately only one in a million children affected. Symptoms typically manifest before the age of three, leading to severe developmental regression where children may lose their abilities to move or speak. The Duplechain family’s experience underscores the emotional and psychological toll that comes with managing such a difficult diagnosis.
The inspiration for the book emerged from the family’s journey, which they hope will educate others about INAD while also providing a sense of hope. “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,” said Curtshandra in an interview with local news. This narrative focus on both the challenges and the resilience of children suffering from INAD aims to foster understanding and empathy among readers.
In addition to the book, Charles and Curtshandra are actively involved in fundraising efforts for a gene therapy trial described by the Inadcure Foundation as the best potential avenue for improving the lives of children affected by INAD. “There’s a lot of headway and progress being made in gene therapy,” Charles explained. He reiterated the necessity of financial support for research, stating, “Those things do take money,” alluding to the potential breakthroughs that could enhance the quality of life for afflicted children or even lead to a cure.
The book’s title alludes to a saying often referenced in medical circles: “When you hear hoofbeats, think horses not zebras.” In this context, “zebras” are the rare medical conditions like INAD that often go unnoticed. The story chronicles the adventures of the “Super Sisters” alongside their rare pet zebra, creatively illustrating what INAD is and how it impacts their lives.
Emery, Jade and Ivory’s eight-year-old sister, also contributed to the book through her artwork. Her intention is to help other children see that her sisters, though different, share similarities with everyone else. “I want them to know how they’re not so different from other people,” she expressed, highlighting the importance of inclusivity.
The Duplechains’ initiative is a testament to their determination not only to advocate for their daughters but also to educate the public about INAD. By sharing their personal story, they aim to build a broader understanding of this rare disorder, which is often overshadowed by more familiar conditions.
*The Super Sisters and Their Rare Pet Zebra* is currently available for purchase on Amazon, and the family is hopeful that the sale of the book will further their efforts to support INAD research and raise awareness about the condition. Through their engaging storytelling, they hope to create a greater sense of compassion and understanding for children affected by rare diseases.
As the Duplechains continue their journey, they encourage others to join them in their cause, emphasising the importance of community support in the face of adversity. Their commitment serves as an inspiration, illustrating how love and creativity can intersect to make a meaningful difference in the lives of those living with rare conditions.