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18-year-old lives an extraordinary life with epilepsy

By KATHRYN EASTBURN The Daily News

GALVESTON

Trysten Pearson does not lead an ordinary life.

Diagnosed at age 12, the now-18-year-old is living with intractable, drug-resistant epilepsy. He’s a crusader for epilepsy awareness. And he was instrumental in the passage of HB 684, also known as Sam’s Law, passed in this year’s session of the Texas Legislature. The law, now in effect, requires all Texas public school personnel whose duties include regular contact with students to be trained in seizure recognition and seizure first aid.

For the past five years, Pearson has helped run a support group for some 200 others with epilepsy in Galveston County.

In May, he earned his Eagle Scout rank with the Boy Scouts of America. His project was a video he produced with other young people, featuring him giving instruction in seizure first aid and epilepsy awareness.

In September, he co-founded the Galveston County Epilepsy Alliance, a nonprofit aimed at offering support to people with epilepsy and spreading the word about Sam’s Law.

Over the past two months, multiple city councils and commissions in Galveston County have passed resolutions officially recognizing epilepsy awareness, Sam’s Law and the Gulf Coast Epilepsy Alliance, with Pearson making special presentations at their meetings. At every meeting, he reminds city leaders that 1 in 26 people in the United States will develop epilepsy and as many as 50,000 school-age children in Texas have it.

Last week, he flew to Saudi Arabia to visit his father, Ronnie Pearson, a journey he makes twice a year despite the precautions that must be made each time he travels, including buying an extra ticket for a trained companion traveler.

And last year, he went skydiving.

In short, Pearson, an 11th-grader at Ball High School, lives an extraordinary life. And he does it in spite of being challenged by frequent convulsions — many of them tonic-clonic, formerly known as “grand mal,” seizures that cause him to lose consciousness and sometimes stop breathing.

“My mission is to never give up,” Pearson said. “Doing what I do requires persistence and growing up with the mentality of never giving up.”

One of the scariest concerns that Pearson faces is the risk of Sudden Unexpected Death in Epilepsy, a peril of severe epilepsy disorders that even many physicians won’t talk about for fear of upsetting patients and their families, Trysten’s mother, Shena Pearson, said.

After Pearson was diagnosed with epilepsy at age 12, she was not informed about about the deadly disorder her son’s condition poses, she said.

“We went a long time before we found out about it,” Shena Pearson said. “I was angry that I wasn’t told up front. We’ve talked about it and we’ve decided it’s important to be up front about it. If you don’t know about it, you can’t do what you need to do to prevent it.”

In his epilepsy journey, Pearson has gone through multiple surgeries and, with his family, has continued to seek out every preventive and protective measure available for people like him, including being implanted with a Vagus Nerve Stimulator or VNS, a device that sends signals to calm down his brain when he is having seizure activity.

Pearson’s major goal is public awareness, born of a desire to be a part of the world rather than set apart from it.

When he was first diagnosed, some physicians advised him to not mention his epilepsy, implying that talking about it might limit his options in the world, Pearson’s mother said.

“He felt alone,” she said. “He was afraid he wouldn’t be able to have a career or a future. We talked about it and decided the best way to move forward was to talk about all of it.”

A special education student who struggles with dyslexia, dysphasia and frequent memory loss because of seizures, Pearson has found acceptance and friendship through the Media Arts program at Ball High School, he said.

“I have true friends that are not scared of my seizures,” he said. “I love being behind the camera and running the DJ system.”

When he’s not lobbying for legislation, appearing before a city government, producing a video or traveling to Saudi Arabia for the winter holiday, he likes to bowl with his mom, Pearson said.

“For Christmas, I got a James Avery charm as a gift for my mother,” he said. “It says, ‘Don’t Quit.’ That’s our motto.”

Kathryn Eastburn: 409-683-5257; kathryn.eastburn@galvnews.com.