Boy Scout overcomes Spina Bifida to achieve childhood goal
By Rachel Greco
Lansing State Journal
DELTA TOWNSHIP, Mich. (AP) - Alex Totte waited for the question. It wasn't the first time he'd been asked it, and he's had an answer ready since fifth grade.
But last month, sitting in a conference room in front of a review board for Boy Scouts of America, giving the right answer was the last hurdle Alex, 18, had to overcome to realize his dream, according to the Lansing State Journal.
"Why do you want to become an Eagle Scout?" he was asked.
"You're held to a higher standard," he said. "People know that they can trust you when it comes to doing things. I'm not just going to do a half-way decent job. I'm going to make sure it's perfect."
But it isn't that simple.
Alex, a Grand Ledge High School senior, has Spina Bifida. He was born with a portion of his spinal cord and nerves coming through a split in his lower spine. The result is severely limited mobility.
Alex has had more than 10 surgeries. He can't use his legs and walks with braces and forearm crutches, often using a wheelchair.
Twenty-one merit badges stood between him and an Eagle Scout rank. It's an honor only 4 percent of Boy Scouts achieve. To earn it he needed to swim a quarter mile, bike a total of 150 miles and camp in a tent for a total of 21 days.
He was 6 when he declared himself up to the challenge and has spent the last 12 years making good on it.
This fall he'll be the only member of Boy Scout Troop 70 out of Wacousta to receive the honor.
"I've always told myself there's nothing I can't do," Alex said. "That never crosses my mind. When people tell me, 'You'll never ...' I just try and prove them wrong."
Where there's a will, there's a way
Jodi and Mike Totte said their son's determination mirrors their own.
Sitting at the kitchen table in their Delta Township home, Jodi Totte points to a photo of Alex after his first surgery, curled up on his tummy, only hours after being born.
Doctors couldn't tell them if Alex would ever walk. At age 3 he took his first steps with a walker.
That might be as good as it gets, doctors told them.
"We would take him, once a week in the spring, summer and fall, to downtown Lansing because he liked the Peanut Shop," Jodi Totte said. "We had to give him motivation to walk. The sidewalk was bumpy but we'd go in there and they'd give him a little bag of peanuts."
In the winter the family would take weekly trips to Lansing Capitol Region International Airport. Alex would walk the carpeted concourse looking at planes just outside the windows.
The activity, and regular physical therapy, helped to strengthen his muscles.
His parents were focused on the bigger picture.
"We wanted him to make goals in his life and achieve his goals," Jodi Totte said. "So that he could walk into his kindergarten class, his first-grade class, his senior year in high school, and be like everybody else. If there was a will there had to be a way."
Troop Leader Glenn DeYoung said Alex, then 10, shared his intentions the first day they met.
"He said, 'I'd like to be an Eagle Scout. Do you think I can do it?" DeYoung said. "I said, 'Do you think you can?' He said, 'I think I can.'"
Alex spent the next eight years achieving merit badges that required him to push his physical limitations.
He used a three-wheel hand cycle to make several long bike trips, all more than 10 miles, including a 50-mile trek near Clare. He finished them with blisters on his hands instead of his feet.
Despite being prone to skin sores, he camped out overnight numerous times over the next eight years, with a parent coming along to help.
Some of the required badges dealt with budgeting and civic responsibility.
He earned another for sailing in Key West, Florida, spending five days aboard a sailboat with a group of fellow Scouts. They snorkeled, fished and learned how to handle the boat.
The most challenging for Alex was swimming a quarter mile. He's a good swimmer but earning the badge wasn't simple.
While submerged and treading water in a 90-acre lake at Northwoods Boy Scout Reservation in Lupton, Scouts had to remove their jeans and turn them into a flotation device. They were tasked with tying a knot in one end of a pant leg and blowing air in one side.
"My lower half is just dead weight," Alex said. "The first time I tried to do it, I couldn't. I only use my arms so I was trying to blow it up and actually keep swimming. It was hard for me."
The next morning he went back in the water without his leg braces and, with five or six fellow Scouts cheering him on, completed the task.
"I just kind of jumped in and did it," Alex said. "I kept telling myself, 'I have to.' There was never the thought, 'I can't.'"
"He's a go-getter," DeYoung said. "There's no stopping him. If he wants to do something he's going to find a way to do it."
DeYoung said Alex rarely asks for help, but frequently offers to assist others.
"It was phenomenal to see someone who struggles to walk getting around with other boys at the same pace," he said.
His Eagle Scout project was the design of two wooden benches. They sit at Delta Mills Park - and were one of the final steps he took to realize his goal.
Totte said when the four-member review board called him back into the conference room to tell him he'd reached it, the news was "a relief."
"It was one of the happiest moments of my life," he said.
"If you put your mind to it you can do anything," Mike Totte said. "This was his goal, it's what he wanted. He never lost confidence in his ability to finish what he started."
Alex is learning how to drive now. He'll use hand levers to control the brake and accelerator. And he's preparing for the next challenge - college.
He's making new goals, including studying to become a counselor, but says he'll never forget achieving the rank of Eagle Scout.
"I always had faith that I could do it," Totte said. "I never doubted it."
Published: Tue, Oct 06, 2015
