When Ashley Rowland’s daughter, Aubrie, was diagnosed with a rare mitochondrial disease called AARS2-related leukoencephalopathy before her first birthday, Ashley’s world changed forever. Seven years later, she continues her fight—not just for a cure, but for understanding. As reported by The Patch, this year, Ashley turned her family’s journey into hope for others, publishing a children’s book titled “Chondrie” during World Mitochondrial Disease Week.
The inspiration behind “Chondrie” came from both a challenge and a dream: how to explain Aubrie’s complex condition to her, and to others, in a way that wasn’t frightening. “I’ve been trying to explain it to her, but in a child-friendly, non-scary way, because it can be a scary condition,” Ashley shared. Aubrie herself struggled to find words to help her friends understand. So, Ashley imagined a story that would speak to all children, not just those with mitochondrial disease.
“Chondrie” introduces readers to a friendly mitochondrion character who explains how bodies create energy and why some children may need extra therapies, devices, or support. By personifying a mitochondrion—a tiny “battery” inside our cells—Ashley makes biology approachable and empathy accessible. The book avoids heavy terms like “terminal” or “progressive,” instead focusing on the spectrum of abilities, therapies, and resilience found in children with rare diseases.
Crucially, the book isn’t just about Aubrie. Ashley, who co-founded the nonprofit CureARS to fund research into mitochondrial disorders, reached out to other families in her network. The characters in “Chondrie” are based on real children with mitochondrial disease, and their stories, symptoms, and therapies are woven into the narrative. This collaborative approach ensures authenticity and helps readers appreciate both differences and commonalities among kids.
The book’s title, “Chondrie,” carries a special touch from Aubrie. As a toddler, she couldn’t pronounce “mitochondria,” and affectionately called it “Chondrie,” a name that stuck and now graces the cover of her mother’s book.
Ashley’s mission goes beyond storytelling. Proceeds from “Chondrie” support CureARS, the nonprofit she co-founded with Desiree Magee, another parent of a child with a neurodegenerative mitochondrial disease. Funds are directed toward research for mtARS disorders, offering hope to affected families worldwide. With mitochondrial diseases impacting an estimated 1 in 4,000 people and few treatment options available, raising awareness and research funds is urgent.
Ashley has already seen the impact of her book firsthand, reading “Chondrie” to Aubrie’s classmates and sharing it with her younger son. For Aubrie, the book means more than understanding; it’s a way to share her story and foster empathy among her peers.
“Chondrie” is available on Amazon, inviting readers everywhere to learn, connect, and support families living with rare diseases. As Ashley puts it, “It’s not just for families with mitochondrial disease, but for all families to understand the wide spectrum and impacts on children.” Through “Chondrie,” Ashley Rowland is lighting the way for compassion, inclusion, and hope.
