Dream come true - Boy with spina bifida reaches top of M on his 12th birthday
By LAUREN RUSSELL for the Missoulian
It was a perfect Missoula summer evening for Zane Kuhnhenn's 12th birthday, the day he climbed his first mountain.
It was a day his mom Dianna never thought she would see.
Zane, 12, has myelomeningocele spina bifida, the most severe type of the birth defect that involves the incomplete development of the spinal cord or its openings.
Paralyzed from the waist down, Zane must wear special orthopedic braces and shoes to walk the short distances he can manage before he tires. He has undergone 12 surgeries in his 12 years and Dianna said the future almost certainly holds others.
“It's really a miracle that he's able to walk at all,” Dianna said.
But on Tuesday evening, Zane stood on top of the M and looked out over his hometown for the first time. It took a procession of 17 of Zane's family and friends, including dad Rich and brothers Zack, Erik and Colter, alternately pulling the blond-haired boy in a wheeled hunting game cart decked out with couch cushions, but he got there.
“I've dreamt of this moment for years,” Dianna said.
Dianna walks the M almost every day with her friend Kay Parmiter. They go up about 30 yards above the M to an area they've deemed “the prayer rock,” where they pray for their children and write their names on the rock in sidewalk chalk.
But she has never written Zane's name.
“I've never written Zane's name because I knew he was gonna write it someday,” Dianna said. “I just didn't know how.”
Dianna always wanted to bring her son to the Missoula emblem. But aside from carrying him on her back, which she can't do, she couldn't think of a way.
“He's had school field trips to the M where he couldn't go and I had to hang out at the bottom with him,” Dianna said. “It's really disheartening to look at your child and say, ‘No, honey, you really can't go.' ”
But on one of her daily hikes about five weeks ago, Dianna met Scott Tipps, sales manager for Bretz RV, who was helping his child up the hill with the aid of a hunting pack used to ferry game out of the woods. After Dianna told him her story, Tipps offered to loan her the pack to transport Zane up the mountain.
Pushed and pulled on a modified game cart by family and friends, Zane Kuhnhenn celebrates his 12th birthday with his first trip up the trail to the M on Mount Sentinel on Tuesday. Paralyzed from the waist down because of myelomeningocele spina bifida, Zane had never been able to make the trip until his mom Dianna organized the birthday surprise.
Photo by TOM BAUER/Missoulian
“I told him, ‘You made my day, have a good day, I gotta go,' I was just so excited,” Dianna said.
Packing Zane up the M seemed like an even better idea after Dianna and husband Rick saw a Discovery Channel program that featured sherpas trekking disabled men on their backs to the base camp of Mount Everest.
“I thought, ‘If they can go to the base camp of Mount Everest, we can go to the M,' ” Dianna said. “We may not have sherpas, but we have Missoulians.”
As Dianna began organizing Zane's birthday surprise and enlisting friends and family to help out, a family friend and EMT said that a pack may not be the safest option and suggested a game cart. Tipps offered to lend the Kuhnhenns his, and the plan continued to form.
It was decided that Dianna's aunt, Karen Screnar, and Parmiter would wait at the prayer rock with 12 balloons, then all would return to a party at the base of the M with cupcakes and friends. The president's office at the University of Montana agreed to let them use the space and waived the $250 fee.
To prepare Zane for the event so that he wouldn't become overwhelmed, Dianna told him about the plan to carry him up the night before and showed him a picture of the mountain she had taken on her camera phone.
“He said, ‘Wow, it's huge,' ” Dianna said. “It's a big deal because I don't think people understand what we take for granted. Do we ever stop and think about how huge the M is when we're on the street? No.”
Zane, wearing a Grizzly cap and shirt, leaned back and enjoyed the ride as the men in the group alternated maneuvering the cart up the path and over the rocks. Thirty-five minutes after they started, the procession reached the prayer rock, and Dianna helped her son out of the cart so he could enjoy the view.
“Awesome,” was all Zane could get out. “It's a great view.”
“I remember 12 years ago today we were golfing, and I got the call that ‘Zane's here but he's got spina bifida so they're rushing him into surgery,' ” Screnar said. “And to see him up here now, it's just fantastic.”
Dianna said that though she didn't want the event to emphasize Zane's disability, it's impossible to ignore.
“I didn't want to focus on it, but he is differently abled,” Dianna said. “But he's just like a typical boy. He just wants to be a boy and keep up with his peers.”
Unfortunately, Zane's condition means that he will have many more mountains to climb in the way of physical and academic barriers.
“School is a struggle,” Dianna said. “But we decided to keep advancing him, keep moving him forward positively.”
But in many ways, Zane is a miracle. He taught himself to ride a bike at age 9 by using his heel to work the pedal, and he can name almost any bug in either the yard or house, which is filled with containers holding his beloved insects.
“Sometimes I throw myself pity parties, and so does he, but we just have to do it,” she said. “There's a lot of stuff we say no to. There's a lot of things other families do that we can't, like taking day hikes or going to Griz games. So you take things like this and you try to make it joyous.”
And on Tuesday evening it was.
The prayer rock now features a shaky “Z-A-N-E” written in green chalk.
Lauren Russell is a newsroom intern at the Missoulian. She is a journalism student at the University of Montana.
