The Spring Lake High School freshman has a goal to raise $1,000 for Conquer Chiari Walk Across America. Tyler and his family are participating in the walk this weekend, partly as a celebration of September being Chiari Awareness Month and because of his own experiences with the brain condition.
“I’m participating (in the walk) because I want to raise money so other kids don’t have to deal with what I had to,” said Tyler, 14.
Tyler started experiencing dizzy spells when he was in third grade. After seeing a doctor for what they thought was an inner ear infection, Tyler received orders to get an MRI, which led him to see a neurosurgeon associated with Spectrum Health’s Helen DeVos Children’s Hospital.
Tyler’s family then learned he has Chiari malformation 1. Additional MRIs revealed he also has syringomyelia, which is a pocket of fluid in his spinal cord, said the boy’s mom, Jen Hosman.
When explaining it to his friends, Tyler tells them that “it’s a condition where my bone in the back of my skull causes pressure on my brain and on my spinal cord.”
“Right now, there is no cure for Chiari,” he said. “I have good days and bad days when I feel sick and feel down.”
After he was initially diagnosed, Tyler was in a monitoring stage because his symptoms didn’t outweigh the risk of surgery. While going about his normal routine, he had MRIs every six months to monitor for growths.
Two years into monitoring, the neurosurgeon removed Tyler from all contact sports — a decision that was hard on the boy as he continued the monitoring stage, his mom said.
After an MRI, they learned Tyler’s syrinx — a cyst or pocket of fluid — grew and needed surgery. For a second opinion, the Hosmans met Dr. Holly Gilmer at the Michigan Head and Spine Institute, and she also recommended surgery to decrease the pressure on Tyler’s brain.
Tyler had posterior fossa decompression surgery on March 20, 2017. He spent several days in the pediatric intensive care unit at St. John’s Hospital before recovering at home. He returned to his regular school routine four weeks later, Jen said.
Currently, Tyler attends physical therapy and osteopathic manipulative therapy to strengthen his joint and muscle weaknesses.
Things like the weather, muscle tension and Tyler’s level of activity all play a role in how he feels on any given day, Jen said.
When Tyler isn’t in school, he enjoys riding his dirt bike, doing computer programming, hanging out with friends and dancing.
By helping fund research, Jen said they hope a cure can be found for Tyler and others. Jen said she’s proud of her son for raising awareness about his conditions.
“When his journey initially began and even through the surgery, he didn’t want anyone to know what he was going through,” she said. “He wants nothing more than a cure to be found so that others do not have to live with the curse of Chiari.”
People can donate toward Tyler’s efforts online at www.conquerchiari.org/ccwaa18/TylerHosman.
On Thursday, Turk’s Tavern in Nunica will be donating 10 percent of sales to Tyler’s fundraising team. It applies to dine-in and take-out meals.