Wednesday fundraiser to benefit local woman with rare disease | PostIndependent.com

Wednesday fundraiser to benefit local woman with rare disease

Ryan Summerlin
rsummerlin@postindependent.com
Shelby Malehorn, seated, along with her boyfriend, Preston Williams, will be holding a fundraiser at K Seas Winghouse Wednesday evening to support the couple, who're dealing with mounting expenses from treatment for a couple of rare conditions with which she has been diagnosed.
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Shelby Malehorn is of Glenwood Springs, and now the community is working to take care of one of its own.

Malehorn was diagnosed with a rare childhood epilepsy, Landau-Kleffner Syndrome, at 5 years old. Her symptoms started with seizures, seeing auras, hallucinations and problems processing and comprehending what people were saying to her.

“It took a couple of years and countless doctors to diagnose me,” said Malehorn, who was born and raised in Glenwood Springs. But when doctors made the diagnosis, they found she had all the symptoms. “I had a classic case,” she said.

She dealt with the seizures and other symptoms for about 10 years, then she finally underwent an electroencephalogram that came back clear. But just a few years later, occasional seizures returned. As she’s grown older, those seizures have grown more frequent and more intense.

In November, she had a long seizure that lasted about five minutes, after which she had developed a severe stutter, almost to the point where she could not communicate through speech.

She was able to speak clearly with the Post Independent Tuesday afternoon, but Malehorn said that isn’t always the case. If she becomes tired or overheated, her stutter worsens to the point that she can’t speak at all.

When she has a seizure or loses her speech, she communicates with her boyfriend, who is also her caregiver, through sign language. She cannot drive, attend school, work or be left alone.

Recently she was also diagnosed with psychogenic non-epileptic seizures, a diagnosis that Malehorn said is relatively new to the medical field. Few specialists treat this condition; one such specialist, Dr. Afra Moenter, is as close as Boulder.

Still, her inability to work and the need to travel to the Front Range every week for treatment has left the bills piling up, and Malehorn is asking for the community’s help.

Though she was at first afraid of holding the fundraiser and asking for the community’s support, Malehorn said her heart has been warmed by donations, both in cash and in items for a silent auction at the fundraiser, from community members.

The fundraiser will also feature Nate Craig, a stand-up comedian who’s appeared on Comedy Central, Funny or Die and “Last Comic Standing,” and who is a writer for MTV.

Shortly after her severe seizure in November, Malehorn saw Craig perform at the Vaudeville Review and spoke with him afterward.

“I told him how much I appreciated his show, because I hadn’t laughed in quite a while because of the challenges I was dealing with,” she said.

In May he reached out to her, saying that he was going to be in Denver this week and that he could perform for the fundraiser.

The event will begin at 6 p.m. Wednesday, and tickets are $20, available at the door. The event will also include food and drinks, provided by K Seas Winghouse.