He's Cannon Carnagey by day.
But now he's letting his long-kept secret out.
"I'm a superhero," he said. "I'm Batman. And I like to rescue babies."
The caped crusader's mission seems appropriate considering he was selected as this year's March of Dimes WalkAmerica ambassador child. The Vici 4-year-old was born with spinal muscular atrophy, a motor neuron disease that affects voluntary muscles used for crawling and walking. His mother Jennifer Carnagey shared his story Thursday during the WalkAmerica kickoff at Northwestern Electric in Woodward.
"There is no cure and no treatment for what my son has," she said. "He will never be able to walk, crawl or roll over on his own."
Jennifer Carnagey said one in 6,000 babies are born with SMA, which is diagnosed through genetic research. She said one in 40 people are carriers of the disease which robs the body of protein to build muscles.
"They never grow muscle as they grow older," she said. "When they get bigger, they outgrow their muscles and then look even worse."
Doctors diagnosed Cannon with SMA when he was 10 months old. Jennifer Carnagey said everything seemed normal after his birth.
"He was a perfect child," she said. "He had black hair and wiggled his arms. He was beautiful."
Cannon began sitting up at five months, but his parents noticed he was missing milestones. Then the diagnosis came. Jennifer, a nurse, did not have to ask many questions about the defect.
"As a nurse, I knew exactly what SMA was," she said. "I tried hard to keep it optimistic for my husband. It was a bad week that week.
"You have all your dreams wrapped up in your child and then you find out something like this. It's not easy."
They overcame the initial shock and began preparing for life that would involve a child who would never walk or crawl and be confined to a wheelchair. He got his first wheelchair at the age of 18 months and learned how to steer it in three days.
"He's knocked doors off the hinges and has broken glass in the front screen door," Jennifer Carnagey said. "But he learned fast."
Cannon now has five different wheelchairs that takes him anywhere his imagination wants to go. His grandfather built a ramp up to the seat of an old tractor where Cannon likes to pretend he's driving the farm machinery. He also likes to wheel out to the barn and help his daddy work on cars and tractors.
"He's daddy's little right hand man," Jennifer Carnagey said.
Cannon begins a new adventure next week when he starts Pre-K at Vici Elementary. He's more than ready for the experience. His cousin Hunter Halderman will be in his class. Cannon regularly takes him for spins on his wheelchair.
"I want to go to school," Cannon said. "I want to play with Hunter. It will be so fun."
Teachers will probably be quick to notice his intelligence. Jennifer Carnagey said that one of the characteristics of kids with SMA is high intelligence.
"He's unusually bright without exception," she said. "And he's very amiable and social."
While he is in school, Grandmother Marie Hunter will serve as Cannon's paraprofessional. If needed, she knows how to move him so that his weak shoulders don't get dislocated. She also will help administer a cough machine that he must use every day.
"I'm a little nervous about him going, but my mother will be helping him all throughout school," Jennifer said. "That makes me feel a lot better. She knows his needs before he does."
The cough machine is not the only apparatus Cannon must use. He has a stander at home which forces him to bear weight on his feet and hips.
"He hates it, because it hurts too much," Jennifer said.
He also must wear braces at night that put pressure on his feet to bring them back to a 90 degree angle. Physical therapy, aquatherapy and occupational therapy are part of his weekly regimen.
"Aquatherapy is important because gravity is his enemy and he can just float," Jennifer said. "If the whole world was up in outer space, he'd be a happy boy."
Jennifer Carnagey said they are just now beginning to explain some of his disease to him. She said he never complains about being confined to a wheelchair.
"He knows he can't walk and he says, 'That's the way God made me,'" Jennifer Carnagey said.
Cannon would rather be walking, but as long he get around, he does not much care. The wheelchair is all he's ever known.
"I'd like to walk all the time," Cannon said. "But if I don't walk, it's OK if I use my wheelchair."
If his mother has anything to do with it, there will be no more babies born with SMA. She said the money raised for WalkAmerica is important in finding a cure which she is confident will come.
"The best thing that's going to come of this is getting the word out about SMA," she said. "A cure will be found through genetic research. It may be far in the future, but it's coming."
Jennifer Carnagey uses every chance she can to teach others about the disease. She said it has taught her a lot about life.
"I've learned that all the plans in the world are nothing if God's plans for you are different," she said. "God has a purpose for Cannon. And we're going to keep him strong and as healthy as we can so he can fulfill that purpose.
"All my life I've wanted to be a nurse and I know God made me be a nurse to prepare for (Cannon)."
She never knew she'd get a superhero out of the deal.
"I have a cape and I like to be a superhero," Cannon said. "I'm going to rescue a lot of babies."
He's Cannon Carnagey by day.
This Week's Circulars
- Woodward man dies in accident
- Lawmakers consider overhauling hunting, fishing licenses
- Local man dies in accident
- Upcoming events in Woodward
- Marijuana focus of video conference with OBN
- Court report
- Boomers to play for Class 4A state soccer championship
- Local grad honored at OU
- Woodward-Clinton soccer championship contest set for 7 p.m. Friday, May 14 in Taft Stadium
- GasBuddy: Average gas price in state increase 2.3 cents