Farr West girl creates awareness for dad's seizure disorder

Monday , September 14, 2015 - 3:18 PM

By RACHEL TROTTER
Standard-Examiner correspondent

FARR WEST — Many girls participate in pageants because they are outgoing, talented and love performing. Katie Jameson, 11, has all those qualities, but her reason for doing pageants runs a little bit deeper — she’s trying to help her dad.

Jameson was awarded the National American Miss Utah title in 2014. She had competed the year before for fun and had been successful. But for her second time around, she wanted to stand for something. She decided to come back the next year, but she had a bigger goal in mind — to bring awareness to her father’s debilitating illness — Psychogenic NonEpileptic Seizures.

Terry Jameson started having the seizures about 18 months ago and doctors couldn’t figure out why or what the cause was. Because they are non-epileptic it is hard to diagnose and treat. Katie’s mom, Andrea, said they can be brought on by post-traumatic stress, but it is not known if that is the cause. With the seizures, Terry has to spend a lot of time in the hospital and is not able to work as a firefighter.

“Katie has always been very girlie-girlie and loves to compete, but when we had no answers about her dad and things were getting rough, a lot of this became about him,” Andrea said.

Katie started doing research and created a Facebook page and handout materials entitled “DADS — a Daughter’s Awareness for Dissociative Disorders and PNES.”

“I just want everyone to know it is a real disorder and help people find treatments and resources,” Katie said.

Katie Jameson with her crown and her pamphlet about her dad Terry's condition, psychogenic non-epileptic seizures. Contributed

She has loved being able to bring awareness to the cause because it is something she can do for him.

“It is easy for us to feel helpless,” Andrea said. “This is something positive she is doing,” Andrea said.

As Katie did her research, she found a doctor in New York City, Dr. Lorna Myers, who specializes in PNES research. Katie emailed her and the two have exchanged emails back and forth. She recently got a letter from Myers thanking Katie for her diligence and research.

“I thought that was pretty cool she was contacted by a head doctor telling her she is excited for her future,” Andrea said.

Katie attends many local and community events, handing out flyers and talking about PNES. She attended several summertime city days and the Weber State University Block Party to hand out flyers to raise awareness. Bella’s Fresh Mexican Grill has agreed to donate a portion of their sales on Sept. 17 and 18 to Katie’s cause for PNES research and awareness.

Katie’s dad has had a recent hospital stay, but feels emotional for what his daughter is doing. One of the things that has been hard for the Jameson family is the stigma that follows PNES. Many think it’s a mental illness and that people suffering from it can’t be helped, which is also hard with insurance. Katie’s work has helped Terry to know that people support and love him in the community, Andrea said.

In November, Katie will compete in the National American Miss pageant in Anaheim, California, where she hopes to take her message to a more national stage.

“I’m going to find a cure,” Katie said.

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