TOPEKA, Kan. (KSNT) - At 16 years old, Drew Larison of Topeka, was a typical teenager, excelling in school and sports.
Now almost two years later, he has an aggressive, debilitating illness doctors can't diagnose.
Hockey is everything for Drew, whether it's watching the NHL, or playing street hockey himself. But now he is forced to leave the street, and settle with playing on his living room floor.
Drew started getting sick in January 2017. "It started with just a little twitch of his finger. He just kept having his finger twitch. My March, it had become a much more significant movement. By May, Drew could no longer walk. Whatever had affected him was rapidly progressing," explains Kate Larison, Drew's mom.
Drew's family took him to Children's Mercy and ultimately the Mayo Clinic. He took a number of tests and a biopsy. But now, 22 months later, doctors still haven't been able to identify what Drew is suffering from.
"They want to find out what it is, but they don't know what it is. And they feel bad, because they can't find out what it is," says Drew.
"The results came back and were inconclusive. They can not identify what this disease is, and it may very well be a new disease," remarks Kate.
As time goes on, Drew continues to get worse, "I have a bad disease," Drew says.
"He started developing a lot of seizures, (and) some hallucinations. It's taken a tremendous amount of medication to try and control those. We visit the E.R. frequently at Stormont Vail to try and stop some of the seizures," Kate explains.
Doctors do know that whatever Drew has is a degenerative disease that affects his brain and other systems in his body. He gets frequent IVIG infusions to prevent his immune system from doing any further damage.
But even with this treatment, Kate says their family's biggest worry is, "Running out of time. We have looked at everything. It's very frustrating in a time where there's so much known about medicine, there is still so much that is not known."
Drew can't attend school anymore, and needs full time care. Katie left her job, and their family downsized their home to help give Drew the best treatment possible.
If you would like to help with Drew's medical expenses, visit the family's GoFundMe Page: https://www.gofundme.com/larison-family-medical-expenses
- Copyright 2018 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
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