Mike Boteilho was worried. His 6-year-old daughter, Ashlee, was in the hospital in July, struck by a rare disease that was robbing her of her ability to walk.
The Boteilho family first noticed something was wrong days earlier, July 12, at Tweetsie Railroad in Blowing Rock when Ashlee complained that she didn’t want to walk anymore. Her parents thought she was just being lazy.
The next day, Sunday after church, Ashlee took a frightening fall in the parking lot. On Monday, the Boteilhos went from the pediatrician to the specialist to the Levine Children’s Hospital.
The diagnosis: A rare form of Guillain-Barre syndrome, a disease where the body’s immune system attacks part of the nervous system. It can cause paralysis and in some cases be life-threatening. Ashlee stayed in the hospital for seven days as doctors tried an experimental drug to help her.
Digital Access for only $0.99
For the most comprehensive local coverage, subscribe today.
Her father knew that, besides the medical treatment, if anything could get his daughter out of the hospital bed and fighting to walk again it would be her love for the Independence High School football and basketball teams.
Boteilho, an Independence graduate, and Ashlee had attended almost all the Independence games the past two years. Now, the season was weeks away from opening and Ashlee wanted to be there. She couldn’t imagine, her father said, that the Patriots could win without her.
“Ashlee had a big board in her hospital room where she wrote her goals,” Boteilho said. “Her No. 1 goal was to see an Independence game.”
So he wrote an email on Tuesday, July 16, to the Independence football coach, explaining Ashlee’s story and Ashlee’s fight. The subject line: Littlest big fan.
“I wanted (Independence coaches) to know that it’s a good thing that these coaches do in the community,” Boteilho said. “All they hear about is they’re not winning or this kid isn’t doing that, but you’ve got little kids looking up to them like they’re the Panthers almost. They’re the real deal in town. I wanted to thank him for helping her get motivated to see one of his games.”
Boteilho didn’t expect much, just something that might cheer Ashlee up.
‘It’s bigger than football’
Coach Joe Evans read the email that night after a summer workout. He saw the attached photo of Ashlee, sitting up in a hospital bed with an Independence T-shirt behind her.
Evans was touched. He wrote back, then called. He had the team send over an autographed football. Quarterback Kelvin Hopkins, Ashlee’s favorite player, made sure each player signed it.
“She was trying to get out of the hospital and get to rehab because she didn’t feel we could win if she wasn’t there,” Evans said. “I have a 6-year-old son and a 3-year-old daughter. I get it, man. It’s bigger than football.”
Evans offered Ashlee the chance to be an honorary captain for Independence’s first home game against North Mecklenburg in late August. That meant Ashlee, who had been feeling down and didn’t want to get out of bed, would really have to attack her rehab. The home opener was just over a month away.
Ashlee remembers how excited she got when her dad heard from Evans. “That made me want to go to the game really bad.”
“(Independence and coach Evans) took her from, ‘Woe is me, I’m laying here in the bed,’ to ‘I want to get out of bed and do better,’ ” Boteilho said. “She was very energized to move and use her walker. She didn’t want to be in a wheelchair at all, and everything was about getting stronger and being able to walk and showing up for that first Independence home game.”
Actually, Ashlee did better than that.
She was cleared by doctors to leave the hospital a few days after hearing from coach Evans. The experimental treatment worked, her father said, and her long-term prognosis is good.
Ashlee began to attack her three-times-a-week rehab with vigor starting at the end of July. She worked for an hour at a time, making her body stronger and learning how to walk again.
She was determined to be honorary captain at the first home game.
‘Dad, is it time?’
Independence began the season Aug. 22 at South Mecklenburg and Ashlee was on the sideline dressed in a cheerleading uniform as Independence won 49-0.
The home opener was just seven days away.
Ashlee attends Patriots Elementary School near Concord, and it’s not lost on anyone that Patriots is also Independence High’s nickname. For days, Ashlee’s classmates got to hear all about her big night. As Friday grew closer, Ashlee couldn’t sleep.
When the day arrived, she asked her mother, Lanese, to pick her up at exactly 3 p.m., the moment school let out. By 3:30, Ashlee had both cheeks painted with Independence’s “Big I” symbol, in Patriots green and gold. She wanted to be at the stadium’s gates when they opened at 6 p.m.
As soon as they walked in, Ashlee tugged her father’s arm. Every few minutes, she would ask: “Dad, is it time? Dad is time?”
Finally, at 6:30, Ashlee lined up on the sideline with the Patriots’ captains. She brought a pink walker to the game, but she didn’t want to use it. As soon as she saw Hopkins, her favorite player, her face lit up.
She left the walker behind.
“It was like she couldn’t speak anymore,” her father said. “All I’ve heard from that moment until today is how awesome Kelvin is and the whole program. She’s even telling kids at school and writing a story about that day and coloring pictures. This is her whole life right now.”
Ashlee grabbed Hopkins’ hand and they walked to midfield with the team’s other captains for the pregame coin toss.
“You could tell she was nervous,” Hopkins said, “but she had this grin on her face that you couldn’t take off, this big smile. She squeezed my hand real hard.”
At halftime, a few Independence coaches approached Ashlee and her family to invite them back to the field after the game. The family thought their moment had ended. But the team had one more surprise.
‘I want you to have this’
After Independence beat North Mecklenburg 28-0 to improve to 2-0, Ashlee and her family returned to the field to celebrate. They shook hands with the players and offered thanks for the special night.
Then, Independence assistant coach Ryan Thompson, who played offensive line on two of the Patriots’ state championship teams, knelt in front of Ashlee and held up a small black box.
“It took a lot of hard work, dedication and passion for you to get here and do this,” Boteilho remembers Thompson telling Ashlee. “You’ve shown me all those traits at just 6 years old, and as long as you keep fighting and working through your physical therapy and everything you’re supposed to be doing, I want you to have this.”
He opened the box and handed it to Ashlee. Inside was one of Thompson’s two state championship rings.
Ashlee’s eyes lit up. Her parents cried.
“I was really surprised,” Ashlee said. “It was very cool. ... I’ll never forget getting that.”
She keeps the ring in a case in her room. “The only time I get to take it out is if I ask my mom or dad,” she said.
Boteilho said he won’t forget any of what the Independence football team gave his daughter.
“When (Coach Thompson) gave her that ring, I had to put my sunglasses on at 10:15 at night,” Mike said, remembering how he began to cry. “It was the kindest gesture anybody can give. I can’t tell you how much one school and one town has meant to one little girl.
“They have helped her through probably the toughest time she’ll ever have to experience in her life. I can’t thank them enough. They made my little girl work harder than she’s ever worked before.”