Tenia Johnson turns the car off and pops the trunk. It must be reflex after all these years.
Johnson’s routine to transport her son is more complicated than most parents could imagine; the Rubik’s Cube look of it makes tedious complaints about car seats seem like tic-tac-toe.
After breaking it down and taking the wheels off, the wheelchair barely fits in the trunk of the Corolla — and it’s just as much work getting it back out again when she reaches her destination.
It’s this mother’s daily struggle that has the community of Warner Elementary School in Nicholasville set on raising the funds to buy her a wheelchair van.
Braden Petrucci celebrated his seventh birthday Feb. 4; he’s faced a challenging seven years that started 13 weeks early in 2006.
“I had no idea what to expect,” Johnson said of giving birth to Braden at 27 weeks. “I thought he was just going to be a premie — it didn’t turn out that way.”
Braden spent 51 days in the neonatal intensive-care unit; while there, he had his first seizure at 14 days old, contracted bacterial meningitis and had a grade-three brain bleed in his head. Afflicted by cerebral palsy, he has spent his life in a wheelchair with minimal verbal-communication skills.
A shunt to drain fluid away from his brain needed four revisions last year, and he’s scheduled for hip-replacement surgery in April.
But there’s more to this first-grader than a medical history.
Braden’s special-education teacher calls his laugh “contagious.”
“He laughs all the time — I’ve never seen a child as happy as him all the time,” Angela McKenzie said. “He brightens up the classroom when he comes in with a smile and laughter, and he gets along with everybody. But he’s a typical 7-year-old; he also has his moments when he balks and he doesn’t want to do something and is stubborn, but that comes along with the age.”
Braden’s capacity for expressive communication may be lacking, but Johnson said he’s very responsive and knows his surroundings.
“I talk to him like a normal kid, and you can tell that he understands a lot of stuff that I’m saying and doing, and he’s aware of a lot of things,” Johnson said. He loves basketball, loves wrestling, loves NASCAR.”
Johnson said it was the arrival of Braden’s little brother three years ago that forced her to face the reality that she needed better equipment than she had.
“When (Darius) came along, that’s when I first realized I was going to have to get a van of some sort in order to help me transport (Braden),” she said. “The breaking down of a wheelchair, putting it together — I did that while I was pregnant with him. People said, ‘I can’t believe you’re doing all that,’ and I said, ‘Well, I really don’t have a choice; that’s the only thing that I know; that’s my reality.’”
McKenzie developed a relationship with Johnson and watched her wheelchair-folding routine, seeing the struggle Johnson said was only going to get worse as Braden and Darius got older.
“As I’m getting older and as he’s getting bigger, it’s becoming more of an obstacle in order for me to let him have normal daily-function activities like a typical kid,” Johnson said. “I want him to feel as normal as possible and be able to enjoy festivities and things that his brother might be getting into as he gets older. It’s just a very bad hardship to try to get the wheelchair together and do everything and break it down and put it in my car — I don’t know how much longer I’ll be able to do that.”
McKenzie took the idea of fundraising for a wheelchair van — “Wheels for Braden” — to Warner’s school-improvement committee in the fall. It didn’t hurt that Braden had asked for a wheelchair van in his letter to Santa Claus. The committee voted and agreed to take the project on.
Johnson said she was in tears when McKenzie called and told her the news.
“She said, ‘We have a Christmas gift that we’re going to give to you. You probably won’t get it for Christmas, but we’re working toward something,’” Johnson said.
The fundraising began with cheerleaders from East Jessamine and West Jessamine passing around buckets at the rivalry basketball games between the schools Feb. 1. That event raised $516.
Johnson was floored by the support for the project at the basketball games.
“I didn’t realize they were going to have T-shirts for him; I didn’t realize that they had a whole booth set up for him, and to see all that support and love that these people were showing for him, it’s amazing,” she said.
The funds raised at the games were a drop in the bucket, but Warner has a long way to go to get to the goal of $30,000.
McKenzie said the school will have several small fundraisers, including teacher selling soup for lunch, selling T-shirts and having a penny war between students. But Warner will also need help in the form of large donations from companies and organizations, she said.
“We’re hoping to get some big donations plus all the little things with the kids involved,” she said.
The committee has scheduled four days with local restaurants when some proceeds will go to Wheels for Braden: Firehouse Subs on Tuesday, Feb. 26; Sonny’s BBQ on Tuesday, March 19, from 5-8 p.m.; Zaxby’s on Monday, April 8, from 5-8 p.m.; and CiCi’s Pizza on Tuesday, April 23, from 5-8 p.m. Tax-deductible donations can also be made to Walk in the Park with Wheels for Braden in the memo line and sent to Walk in the Park, PO Box 93, Keene, KY 40339.
Johnson said she was floored by the support for her “very, very special” son.
“He’ll brighten up anybody’s day with his laugh, with his smile,” she said. “He’s a great kid, and he just wants to be able to enjoy things in the way that other normal, typical kids can.”