Race To Find A Cure: Mom Continues Fight For 4 -Year-Old's Rare Disease In Somerset County

BRIDGEWATER, NJ — It's literally a race against time for 4-year-old Aubrie Rowland, who was diagnosed at the age of 2 with a rare and terminal disease - mitochondrial disorder.

Aubrie's mother never has and never will give up hope.

"As her mom, I don't want her to get worse. Research is kind of a marathon rather than a sprint," said Ashley Rowland of Raritan who co-founded CureARS with another mom with the goal of saving their kids' lives.

As part of her race to find a cure, Rowland and her 501(c)(3) nonprofit which launched in September 2021, is holding the 2nd Annual Run4Rare with CureARS on Saturday, May 13 at Duke Island Park starting at 9 a.m. (See flyer with full details below)

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

"We do this for our kids and we want to find a treatment for them. There is a time component involved and we want to get there as fast as we can," said Rowland.

Aubrie's Story

Rowland's journey to find a cure began when her daughter Aubrie was 11 months old. She was a happy baby who was developing normally until she had a fever. Read More: Raritan Mom Fights To Find Cure For 3-Year-Old's Rare Disease

The fever ended up going away but then it kept coming back. Every two weeks Aubrie would spike with a fever. Rowland took Aubrie to the doctors over and over again and they couldn't explain it.

Eventually, she went to a Neurologist who recommended Aubrie see a genetic doctor.

In November 2020, Aubrie, who was 2 and a half years old at the time, was diagnosed with a mitochondrial disorder that causes a rare incurable brain disease known as Leukoencephalopathy.

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.

Update On Aubrie

Aubrie is doing relatively well with her 5th birthday coming up in June.

"She has moments when she is sick or tired. Now she has a little bit of a hand tremor, which is not noticeable all the time," said Rowland.

Rowland is also putting patches on her eyes for two hours a day since she has developed a little bit of double vision. She had neurological symptoms with a fever every two weeks.

She has undergone a lot of tests and seen many different specialists as Rowland and doctors learn about her new symptoms.

In good news, she hasn't had any emergency room visits.

"She's really doing good. Running, jumping, and keeping up with all her friends," said Rowland. "When you meet her you may not know she is sick."

However, her disease is considered progressive and Rowland is always watching her.

Rowland is hoping through her annual race and organization that she can raise awareness and funds to help cure this disease.

"My heart is in it because of my daughter," said Rowland. "I want to find a treatment for her."

For more information on the Run4Rare event or to donate visit curears.org/runrare-2023 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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