'A Remarkable Child': Family of 5-Year-Old With Brain Condition Raising Money for Research

A Woodstock 5-year-old is battling a brain condition, and her family is looking to spread awareness about the disease that affects more than 1 million people nationwide.

Ashtyn Leigh Stonebraker was diagnosed with hydrocephalus at birth. The condition affects her in different ways, including extreme fatigue, irritability, as well as nausea and vomiting, said her mother, Lisa Jean Stonebraker.

Ashtyn had a grade three bilateral hemorrhage in her ventricles, or bleeding in the brain, which her mom said is what caused her case of hydrocephalus.

“She was born at 33 weeks and had a traumatic birth,” Lisa Stonebraker said. “We adopted her and her twin brother, Zephyn Lee, and we believe that the birth mother had been in labor for a period of time before making her way to the hospital, so there were already some traumatic things happening at birth.”

Due to this condition, Ashtyn has had 10 brain surgeries, six of which have been within the last five months.

“Hydrocephalus is one of those things that’s not commonly talked about because it isn’t necessarily affecting as many people as a lot of other conditions,” Stonebraker said. “If my memory serves me correctly, about one in every 750 babies are born with hydrocephalus or develop it shortly thereafter. While it is something that you can develop at any point in life, it does primarily start affecting someone at birth, after birth, or usually after the age of 60. “

To help combat the side effects of hydrocephalus, a medical device called a shunt was inserted into her brain when she was a month old to help control the side effects of her condition.

The shunt is not a cure, Stonebraker said, adding that shunts often fail, become clogged, and subsequently need to be replaced through revision surgeries. Shunts in children have a failure rate of 50% in the first two years after placement.

“This is a life-threatening condition and is something that she will live with — she will always have a shunt because, in her case, it keeps her alive,” Stonebraker said. “If she didn’t have the shunt, the pressure would build up and cause brain damage, leading to her body shutting down.”

Ashtyn’s more recent surgeries have been due to needed revisions to the valve of the shunt in her brain behind her right ear, Stonebraker said.

“Statistically, kids will have a revision prior to the age of 2, so kids will have a shunt put in shortly after birth and will usually have their first malfunction within that first two years,” Stonebraker said. “By the grace of the universe, we skated right through those first two years, and all was good. However, the year she turned 3 was her first revision. We were good for almost a year before two more revision surgeries were needed the following year.”

Eight months later, more revision surgeries were needed.

“When we had back-to-back-to-back revisions last year I was so frustrated,” Stonebraker said. “I searched the Internet because I wanted another option for my daughter because she is so young and each time she has to go to the hospital and be put under anesthesia and go through surgery — it’s just frustrating to see her in that state and I thought there has to be another option.”

As Stonebraker continued to look for other options and help, she came across the Hydrocephalus Association .

The organization, based in Bethesda, Md., is working to find a cure for hydrocephalus and improve the lives of those affected by the condition, according to its website.

“Knowing that there aren’t any alternatives out there for her right now is difficult, but the primary research on hydrocephalus is coming from that association and is so important — I want to help them in any way I can because, even if this isn’t going to help her in her lifetime, it could help another family that comes along,” she said.

She added that “this is something that affects the whole family unit. Her brother knows when she’s sick.”

“We are a two-mom family, and he knows when one of us is at the hospital with Ashtyn that something is happening,” Stonebraker said.

Though Ashtyn lives with this condition, her parents describe her as “resilient, happy and always smiling.”

“Her energy and sheer joy for life is beyond anything I’ve ever known,” Stonebraker said. “She’s just so happy and I know she is here for something so much bigger than I can even fathom for her. She is in kindergarten, does gymnastics and plays soccer too. She is truly a remarkable child.”

To help raise awareness and money for further research on a potential cure for hydrocephalus, the family is joining the association’s Atlanta Walk to End Hydrocephalus at 9 a.m. Sept. 28 at Alexander Park, 800 Old Snellville Highway in Lawrenceville.

Those interested in registering for the walk can visit tinyurl.com/332pwaxh . For those who can’t participate, there is also a direct donation option.

To join Ashtyn’s team in the walk, visit tinyurl.com/3sbpjjed .