'I Do This For Aubrie': Raritan Mom's Fight For 5-Year-Old's Cure Is Not Over

RARITAN, NJ — It's been a five-year battle to find a cure for her daughter Aubrie and Ashley Rowland of Raritan is not backing down.

Rowland, along with another mom in Maryland, started their 501(c)(3) nonprofit CureARS in September 2021 after their children were diagnosed with a rare disease, mitochondrial disorder — of which half of those affected do not live past their 10th birthday. Read More: Raritan Mom Fights To Find Cure For 3-Year-Old's Rare Disease

When doctors essentially gave up on Aubrie, Rowland picked up the fight for her life.

"I do this for Aubrie. All I ever want is for her to live a long happy life," said Rowland to Patch. "There is no way to stop the progression and while she is doing well now it is a progressive condition. I hope one day she won't have to worry about that."

This devastating and progressive genetic disease has no current FDA-approved treatment available and research funds are extremely limited. This disease causes motor and cognitive decline similar to other neurological disorders, such as Parkinson’s Disease.

"Aubrie has taught me more about what it means to be brave, than I can ever teach her. She lives in a world where doctor appointments, bloodwork and therapies are a normal every week occurrence. She takes an injection every day along with a long list of medications and does this willingly," said Rowland. "I wish every day that she didn't have to be that brave, that she could just be a kid."

Keeping in good spirits, Aubrie started Kindergarten this school year and lost her first tooth. She also does swimming and ballet and will be doing T-ball in Bradley Gardens in the spring.

Now, just over two years since launching her nonprofit, Rowland said she has been able to raise $430,000 for research on mitochondrial disorder.

Additionally, Rowland said CureARS recently received a grant to create a patient registry.

This will allow parents across the country to register their children and share how the disease has progressed, what treatments they have tried, and what treatments have worked or didn't work.

The registry will offer guidance, "rather than having patients recreate the wheel since doctors are not communicating with one another," said Rowland.

"We are trying to do this so we can not only learn from each other but create some sort of standard of care," said Rowland.

To continue her fight to find a cure, Rowland is hosting her 3rd Annual Run4Rare with CureARS on Saturday, May 18 at Duke Island Park starting at 9:30 a.m.

All proceeds will fund research for Aubrie Rowland and thousands of others affected by the Mitochondrial ARS Disorders – Rare Degenerative Brain Diseases.

"Aubrie and others affected may be rare, but they deserve the same level of care as anyone else. The reality is, that because her condition is rare, there is very little to no money that goes into these conditions. When Aubrie was diagnosed I was told she had a terminal condition and there was nothing that could be done, because there wasn't enough research into her condition. I decided early on that there was something I could do, and I created CureARS with another mom," said Rowland. "We both desperately needed a way to fight for our kids and others affected. As a parent, we just want our kids to be safe, happy and healthy. Participating in the run can contribute to saving Aubrie's life and others like her."

For more information on the Run4Rare event or to donate visit curears.org/run-4-rare-2024 or email ashley@curears.org.

For more information on CureARS follow:

• facebook.com/curears
• instagram.com/cure4ars
• linkedin.com/company/curears/about
• twitter.com/cure4ars
• facebook.com/hope4aubrie

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