Spokane community steps up in a big way to help teen

A Greenacres teen living with a rare neurological disease will get the help he needs thanks to overwhelming community support.

Earlier this month, 4 News Now shared Caleb Johansen’s story. The 16-year-old lives with conversion disorder. That means his body turns emotional and psychological stress into a physical response.

In the past five years, Johansen’s temporarily lost his vision, hearing, use of his legs, and complete muscular control. He has seizure-like episodes, which causes his entire body to shake. The condition got so severe, he had to be pulled out of school. Lisa Morgan, Johansen’s mother, called it completely debilitating.

“I’ve seen him lose complete use of every single muscle in his body and only be able to blink at me and there is nothing I can do,” Morgan said.

Morgan recently learned about innovative treatment available through Cognitive FX, in Provo, Utah. Doctors there can map Johansen’s brain and create specialized treatment to help him live a more normal life.

But, insurance doesn’t cover it.

Johansen made it to the top of the waiting list earlier this year, but his mother couldn’t come up with the more than $10,000 they needed for the trip and treatment.

So they pushed back treatment and kept fundraising.

They had a goal to raise the money by July. Local businesses, including coffee shops and a Spokane winery, held fundraisers, which helped the family. Then other members of the community started donating to bridge the gap.

Morgan said the community’s generosity helped them raise about $7,500. So, over the weekend, Johansen was able to fly to Utah for treatment. Halo Medical Travel Services coordinated the flight and an affordable place for the family to stay while Johansen receives treatment.

Johansen said the treatment likely won’t completely get rid of his symptoms, but will make a huge impact on his quality of life.

“I can hardly imagine how helpful it would be,” Johansen said.