Raritan Mom Pens Book Inspired By 7-Year-Old Daughter's Rare Disease

RARITAN, NJ — Raritan mother Ashely Rowland has been fighting to save her daughter's life since before Aubrie was even one year old.

Seven years later, Rowland's fight is not over.

Continuing on her mission to find a cure and raise awareness about the rare mitochondrial disease, Rowland released a children's book during World Mitochondrial Disease Week (Sept. 15 to 21) to raise funds for research benefiting her daughter and others impacted by these conditions.

Her book introduces Chondrie, a mitochondrion character who helps explain energy and how children’s bodies may function differently.

Inspired by her daughter, Aubrie’s diagnosis of AARS2-related leukoencephalopathy (a type of mitochondrial disease), Rowland created the story to offer support, promote inclusion, and raise awareness for families facing similar circumstances.

Rowland's idea behind the book centered around Aubrie and the trouble she encountered trying to explain the disease to her or others.

"I've been trying to explain it to her, but in a child-friendly, non-scary way, because it can be a scary condition," said Rowland to Patch.

Rowland noted Aubrie was also trying to find her own voice to figure out how to understand it or share what the disease is with friends.

"So I thought, 'You know what?' It would be great to have a children's book that explained it in a more light-hearted way, and not using words like 'terminal' or 'progressive'," said Rowland.

Rowland, who is co-founder of the non-profit CureARS, which raises funds for research on the mitochondrial disorder, said she started speaking with some of the families she works with through her organization and decided to include their stories in the book.

"All of the characters in the book are different kids with mitochondrial disease, and they really have some of the symptoms or therapies that are discussed in the book. And so it was really a project with my family and the families of the nonprofit as well," said Rowland.

The book introduces mitochondria as tiny batteries of the body, and it explains why children may need different therapies, devices, or extra support.

The book is not just for families with mitochondrial disease, but for all families to understand the wide spectrum and impacts on children.

"I think the book explains the spectrum a little bit, but it also shows a wide variety of disabilities that may impact other kids, and it also goes into different therapies," said Rowland.

Adding another personal touch is the title of the book "Chondrie," which came from Aubrie.

"When she was little she went to all her appointments and during her appointments, she would hear the word mitochondria, or mitochondrial disease. And when she was small, she didn't know how to say mitochondria, so she called it Chondrie, which is the name of the book," said Rowland.

With the book completed, Rowland was able to read it to Aubrie's class and share it with her little brother Archer.

"She was telling me recently that she really wanted to be able to explain it to her friends, but she had a hard time figuring out how to explain it or make her friends understand," said Rowland. "I think she was really excited for the book, and excited for me to read it to her friends, so that way she could share a little bit more about herself to them as well."

Now available on Amazon at https://a.co/d/dLZ9mTn, the book encourages empathy and resilience by sharing true stories and fostering conversations about rare diseases and disabilities.

Proceeds from this book go directly to CureARS, supporting research into rare mtARS disorders and giving hope to families around the world.

CureARS is a 501(c)(3) non-profit organization founded in 2021 by Rowland and Desiree Magee, with the aim of advancing treatment and support for individuals affected by mitochondrial aminoacyl-tRNA synthetase (mtARS) disorders.

• Related: When Doctors Gave Up Raritan Mom Took Up The Fight To Find A Cure For 3-Year-Old's Disease

Both founders are parents of children with neurodegenerative mitochondrial diseases: Aubrie Rowland (7) from Raritan, and Daphne Magee (10) from California.

Mitochondrial diseases impact approximately 1 in 4,000 people, yet currently there are no approved treatments or cures. Due to the rarity of these disorders, available funding remains extremely limited.

For more information on CureARS visit curears.org or follow facebook.com/curears, instagram.com/cure4ars, twitter.com/cure4ars.

To follow Aubrie's journey visit facebook.com/hope4aubrie.

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