The sly smile appears at the first mention of going to a baseball game, going outside to swing or heading to the pool.
Jack McGee can’t speak due to severe cerebral palsy. But when it comes to his favorite activities, he doesn’t need to say a word to tell you how he feels.
“He’s the happiest kid when he gets to go outside. You can see it,” said Katie Griffin, Jack’s mother.
Cerebral palsy might have stolen Jack’s ability to walk, talk and play like typical boys, but the 13-year-old has pushed beyond his limitations, developing a love for baseball, swimming and the outdoors.
As he has grown, it has become more difficult for his family to take him to the park or go on short trips. They worry that without a handicap-accessible van, those outings will become too rare.
“He likes to be outside a lot, and he likes to go places. As he’s gotten older, it’s become more difficult,” Griffin said.
Jack was diagnosed with athetoid cerebral palsy when he was 8 months old.
During his birth, Griffin’s uterus ruptured. At a crucial point, Jack received a dangerously low amount of oxygen, which left him with cerebral palsy.
Jack is tube-fed, receiving nutrients through a pump that goes directly into his stomach. He needs help with all of his daily activities, from brushing his teeth to getting dressed to washing himself.
Despite the disability, Jack’s family has tried to give him every opportunity to be a typical child.
Though he does not speak, his wheelchair is equipped with a Dynovox audio device, which he controls with his knee. The machine gives him a voice that he uses to ask questions, let people know if he needs something and participate in his sixth-grade class at Center Grove Middle School North.
Jack plays baseball on the Challenger team in Greenwood. Out in the sun on the ballfield, he’s never happier than when he’s circling the bases or scoring a run, Griffin said.
For years, he has been on the sidelines to watch his sister, Bridey McGee, and seven stepsiblings play sports. Getting to participate himself has been amazing for his self-esteem, Griffin said.
One of his favorite activities is going with his mother to the store. But the ordeal of moving him in and out of the car is making it too hard, Griffin said.
The disease left him unable to control his arms and legs, and he’ll often have spastic fits of movement. When he’s kicking and flailing, it becomes difficult and dangerous to move him, Griffin said.
“It’s not safe. Even when he’s not upset and he’s in a good mood, he’s moving around, and you never know which way he’ll go,” she said.
Every time he needs to go to physical therapy, school or a baseball game, his family has to lift him out of his chair, move him into a car seat, strap him in and heft his wheelchair into the car.
His motorized wheelchair weighs about 55 pounds, a strain for anyone who has to lift it into the family’s existing van.
“It’s heavy enough and awkward enough that I have twisted my back, pulled muscles. In the snow and ice, trying to get him out and get the chair in, it’s becoming a safety issue for everybody,” Griffin said.
That difficulty has led the family to enter a contest in the hope of winning a van equipped with a ramp.
Jack is one of 1,100 disabled men, women and children who are sharing their stories in the hopes of receiving an accessible van.
The contest is organized by the National Mobility Equipment Dealers Association in recognition of National Mobility Awareness Month. Officials wanted to honor disabled people from all over the country who volunteer, educate, advocate, achieve and persevere, said Dave Hubbard, executive director of the association.
Every nominee is listed online, and the public can vote for who they feel is most deserving. The winner receives a Chrysler van custom-made with a wheelchair ramp.
A friend of Jack’s family recommended they enter. At a crossroads with how to safely transport Jack, they thought the contest was the ideal solution, Griffin said.
“I’ve been Facebooking the link every day so people can vote. My brother-in-law created a graphic for Jack, and I’ve been sending that out and made it my email signature,” she said. “I’ve been telling everyone I can about it.”
As of the end of April, Jack had received about 3,000 votes. People have until Friday to vote for him.
The family understands that it’s a long shot they’ll win the contest, Griffin said. But the work is worth it if it means Jack can keep playing baseball, going to the pool and taking trips with his family, even as he grows bigger.
“I’m getting to the point where I need to think twice about whether to take him, and I’d rather him be able to go whenever he wants,” Griffin said.