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

RARITAN, NJ — When Ashley Rowland's daughter was diagnosed at the age of 2 with a rare disease, mitochondrial disorder, of which half of those affected do not live past their 10th birthday.

Doctors essentially gave up on Aubrie before giving her a chance to fight.

"We were initially told to take my daughter home and enjoy our time with her. My daughter is early in her disease, most would not immediately know she was sick. Her doctors were giving up on her before she ever had a more serious symptom," said Rowland of Raritan.

Rowland did not back down and instead made it her mission to fight for a cure.

Her journey to find a cure began when Rowland's daughter Aubrie was 11-months-old. She was a happy baby who was developing normally until she had a fever.

"She was having a really high fever with abnormal eye movements so we rushed her to the ER because we thought she was having a seizure," said Rowland, who works as a nurse.

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.

"It took a year and a half to get a diagnosis," said Rowland. "We were pretty persistent."

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.

While doctors threw in the towel, Rowland dedicated her time to researching what she could do to help.

"When I started this journey it was really upsetting that there was no treatment, no cure. We were just told to just see how she grows," said Rowland.

Rowland instead started taking Aubrie to a specialist at the Children's Hospital of Philadelphia(CHOP) and another specialist in Maryland.

"There are no specialists for her disease in New Jersey," said Rowland.

She also found there was no money for research on this disease.

While in Maryland she met another mom with a similar type of condition to Aubrie's. Together they co-founded the non-profit CureARS to raise funds for research on the mitochondrial disorder.

The non-profit was launched in September 2021 and they have their First Annual Run4Rare with CureARS hosted by Raritan Valley Community College (RVCC) on Saturday, April 23.

Rowland's goal is to raise enough money to start a research project by this summer with CHOP.

"All money raised will go to research. We take no salary. We put our own money into filing fees. Everything is voluntary. This is 100 percent for our kids.," said Rowland.

For more information on the Run4Rare event or to donate visit curears.org/run4rare 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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