Northridge family needs help to fight rare, debilitating prion disease

NORTHRIDGE, LOS ANGELES (KABC) -- A father is battling a rare disease that's robbing him of his memories and ability to articulate his thoughts, but he and his family are determined to keep fighting.

Adam and Brinden Wohlstatter first shared their beautiful love story with Eyewitness News in March 2015. They also shared their fear of what was to come.

Before they shared their story, Adam found out in June 2014 that he has an extremely rare disease called prion. It attacks the brain similar to the way Alzheimer's or ALS does, and there is no cure.

"It's very difficult to deal with somebody who is suffering from prion disease. You watch your loved one slowly decline in front of you," Dr. Michael Geschwind said.

The father was an educator in Moorpark and Simi Valley, but in the months that followed, the disease took hold. Because of the disease, Adam can no longer work and needs costly medical treatments as well as visits to see specialists.

He is slowly losing his ability to walk, speak, swallow and breathe. That had only been seven months since our first interview with him.

"It's just very difficult to see your husband over such a long period of time, but just slowly but surely be gone. He's just losing every part of who he was," Brinden said.

Adam is disappearing. Two years after talking about it with Eyewitness News, he's asked to talk about his first date with Brinden and looks at her for help remembering it all.

He even picked up a photo trying to remember things about his father.

It's another incredible part of Adam's story, his father and two half-brothers died from prion. Adam grew up estranged from them, so he had no idea until after his diagnosis. This also means his and Brinden's son Greyson, 6, has a 50-50 chance of having it.

This has been overwhelming for Brinden.

"It's just emotional. That is the hardest part is just seeing him slip through my fingers," she said.

Despite his struggles, Adam is quick to express his love, happiness and even display a sense of humor.

"I love you. Cocktails. Cocktails," he said.

Most importantly, Adam is still in there. During a painful moment with Brinden, Adam quietly watched from the side and showed he understood.

"He'll say, 'I have prion disease. I'm probably going to die from this, but I'm happy and I've lived a good life. I'm happy.' And, that's...he's just been my inspiration. So, yeah, that's, I think, how we get through," she said.

Their marriage is still full of optimism and hope. Optimism that will allow Greyson a life beyond what his father has and hope that Adam can live the rest of his days with love, happiness and dignity.

If you would like to donate to help Adam and Brinden with his medical treatments, as well as fund research, you may donate to this GoFundMe page by clicking here.
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