Community rallies behind family with unborn child facing 3 brain disorders, kidney disease

Local News

ANGOLA, Ind. (WANE) — An expectant family faces an uncertain future after their unborn child was found to be fighting several serious disorders.

“They hit us all at once and it was very, very surreal, a good couple of weeks of numb, anger, sadness,” said Seth Fifer, who is expecting his first child with his wife Kayla.

Fifer owns CrossFit Angola while Kayla is a physical therapy assistant at Indiana Physical Therapy. As the couple was preparing to welcome their baby girl, to the world, an ultrasound found fluid build up in the back of their child’s brain.

The discovery led to another ultrasound and ultimately a trip to Riley Hospital for Children where Kayla underwent a prenatal MRI. The MRI showed their daughter to have three separate rare brain diseases: Dandy-Walker Syndrome, Polymicrogyria, and Schizencephaly. She was also diagnosed as having kidney dysplasia, a condition where a kidney does not develop normally, in both kidneys.

“The biggest part was it was so unexpected,” said Fifer. “The doctor out of Fort Wayne thought fluid on the brain is pretty common, and it could become from a bunch of different reasons and he kind of told us that, worst case scenario, she may need a shot to drain it, and she would live a regular, normal life. So, to find out that she had three brain diseases that will cause severe handicaps was just shocking.”

The Fifers were told that Riley has not seen a case of all three of those have been found in one child, which leaves the Fifer’s uncertain what to expect after their daughter’s birth. What they do know, is the path forward will not be an easy one.

“They’re expecting seizures, they’re expecting potential difficulty breathing and feeding on our own,” said Fifer. “They’re expecting somewhere around the kindergarten to preschool level of cognitive development with potential to never walk and talk on our own.”

The severity of the situation resonated with their friend Evan Howe, an officer with the Angola Police Department who was shift partners with Fifer before he started his CrossFit business. Howe, whose wife gave birth in late 2020, said he felt for his friend.

“We’re having the time of our lives and it’s supposed to be this huge exciting thing in your life and then all of a sudden, you just get devastating news,” said Howe. “It was just one of those things where I had to do something. (The thing I] Could do something about that is a huge burden just weighing on your mind which shouldn’t be the thing you’re thinking about is finances. They’re gonna have this baby that’s gonna have probably all kinds of disabilities, and, you know, maybe Kayla would be able to go back to work or, you know, I got my hospital bills, and they just keep coming in and we’re only like five days extra in the hospital.”

Howe had made the offer to help in any way he could but said that the more he thought about the situation, the more he began brainstorming a concrete way to help.

“The one thing that I could do something about that, like, is a huge burden just weighing on your mind when it shouldn’t be the thing and thinking about his finances,” said Howe.

Although Howe admits he was not sure how to go about setting up a fundraiser, he began asking around the community and was eventually able to connect with some small business owners who turned his idea into reality. Several businesses put out jars to collect donations while a silent auction was set to be held at the Brokaw Movie House next week.

“We’re gonna have it set up for six days here at the Brokaw,” said General Manager Taylor Kerner. “People can kind of come and go as they want to place bids. That Friday we’re planning to do a cocktail hour, kind of like a final bidding hour,”

Kerner said it is not a surprise that so many have offered up help.

“I just think we’re really blessed here and we have great people there are a lot of really just amazing people with big hearts in our community,” said Kerner. “I think when something like this happens, or really anything, I’ve seen big and small things happen throughout the years people are just, they’re so willing to just jump right in and do whatever they can to help.”

For the Fifers, that support has helped them cope as they come to terms with the severity of their daughter’s unknown future.

“It’s helped us a lot knowing that there is support through our community to just help us be there for us,” said Fifer. “All those little things really help take our mind off it, help us get through it a little bit.”

The movie theater is still accepting items to be auctioned up until Sunday. The silent auction will then be held Monday through Saturday from 11:00 am to 8:00 pm. More information can be found on the movie theater’s Facebook page.

A GoFundMe page has also been set up for the family.

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