Tyler was playing in the mud and water from the snow melting outside his home. Using a stick, he directed the rivulets of runoff water through a path to continue their flow down the road.
As Tyler left the puddle to go into his home, he jumped about six inches in the air to shake off the water and muck from his soles, and as he did so, his plastic, prosthetic feet clacked together. He landed softly and bounded up the few steps into his home.
Tyler was wearing his running feet that day, as he does nearly all the time.
“They’re supposed to be just for running, but because he’s going on 12, he’s always running,” said his mom, Shara Johnson.
Inside the house, Tyler went to find his “regular” feet, prosthetics with a fixed ankle joint and solid, wood-looking finish. They were still inside his snowboarding pants, still fastened inside his snowboarding boots from the last time Tyler was on the mountain. He goes about every two weeks, he said, and he recently took up rock climbing, mostly at the Steamboat Springs Middle School climbing wall.
Tyler lost his feet and part of one hand after contracting meningitis in June 2008. Although a lab never diagnosed him, doctors tell him it’s clear what he suffered from. Since then, he and his mother have started working with the National Meningitis Association, and Tyler and Shara Johnson are featured in a public service announcement with voicesofmeningitis.com, trying to teach other families about meningitis and encourage them to vaccinate their children.
Last summer, Tyler and his mom traveled to Chicago for a commercial photo and video shoot for the Web site, and Shara Johnson said she’s been told the commercials are running on national TV, though they have yet to see one. The two also plan to work with the Northwest Colorado Visiting Nurse Association for a meningitis vaccination drive in Steamboat Springs soon.
When he isn’t wearing his prosthetics, Tyler has a few other options for getting around, but none of them is entirely comfortable. When the doctors removed his feet, they reattached his heel bone directly to the bottom of his leg.
Tyler has learned to walk on the heels for short times without shoes, but Shara Johnson and her boyfriend also have created a pair of “short boots,” boots with the toes cut off and the front stitched over, for Tyler to walk in. Shara’s boyfriend, Larry Crawford, also made a wheelchair ramp for the time before Tyler got his prosthetics and adapted the bunk bed to make it easier for Tyler to jump up.
Some everyday objects cause small setbacks, too.
“The cheese grater, of all things,” Shara Johnson said. “He can’t grasp both objects at the same time,” so the family got a standing grater to make it easier.
Tyler still has trouble with doorknobs with his right hand, where the muscles have frozen in place as a result of the meningitis.
“I can too open a door,” Tyler said after his mom explained.
He went over to the front door of his house in the Fish Creek Mobile Home Park and tried with his right. He couldn’t quite get a grip. He found that it wasn’t working with his right hand alone, and he had to switch to his left.
“OK, maybe I can’t,” he said.
At the middle school, gym teacher Chris Adams uses a few adaptations for gym class, and he’s not above using duct tape.
For the snowshoe days, Tyler brings snowshoes from home, and he and Adams attach them to his prosthetics so he can join the class for the activities.
“We use duct tape, whatever it is, because Tyler is determined to be like the other kids,” Adams said.
Adams said Tyler participates in all the activities and is routinely running around the gym doing everything his classmates are doing. Adams was Tyler’s teacher in elementary school, too, before he lost his feet. He said Tyler always has been an active member of the class and school.
“When he first got his prosthetics, he was running around the gym, and his face was just glowing,” Adams said. “He was so happy to have them on and be running like he used to.”
Despite the setbacks the meningitis caused, Shara said the support of the community and the quick actions of the doctors, along with some good luck in the progression of the disease, have made things better than they could have been.
“In retrospect, Tyler lucked out,” she said.
With the support from friends, family, community fundraisers, health insurance and her bosses at Yampa Valley Medical Center, Shara Johnson said the financial burden wasn’t as difficult as expected.
“The community has been more than overflowing in their want-to-help, not-knowing-how-to-help attitude,” she said. “It’s been so wonderful for everybody to have such a good support system.”
There are no more medications and no more physical therapies scheduled for Tyler — playing as a normal child is the best physical therapy, doctors said — and everything is back up and running with the family, Shara Johnson said.
“Yeah, Tyler’s back to being a pretty basic everyday kid.”