No Mountain Too Tall: Lousiana Girl With Rare Muscle Disease Lives Without Limits

Avery Friedmann was strung into a climbing harness, on top of a 30-foot hunk of rock in the middle of Estes Park, Colorado — and she was upside down.

She was also laughing.

“So, here I am, hooked up to this giant rock and I’m looking straight down at the ground,” she says of the summer 2015 adventure. “I wasn’t afraid. I actually started to laugh, because I thought it was the funniest thing in the world. Of course, I would manage to flip myself upside down.”

Though that part didn’t go as planned the first time, Avery is not one to quit.

The 18-year-old was on a week-long summer trip in Colorado that she and her siblings do each year. That particular day, the goal was for her to climb up the rock face and rappel down. Because her arms are weak, Avery hiked to the top with her brother-in-law instead of climbing, then strapped into the harness to rappel down.

On her second try, she was bouncing gracefully down the Colorado rock right-side up, just like her fellow climbers had done before her.

“It was very cool,” she says.

Avery successfully rappels down a rock face in Estes Park, Colorado in summer 2015.

Avery is diagnosed with an extremely rare type of muscular dystrophy called Arthrogryposis Multiplex Congenita Distal Type 2E.

She’s had 23 surgeries to help her live more fully and relieve the contractures in her hands and feet that are caused by her disease. These contractures happen when regular muscle, tendon and joint tissue is replaced with tough fibers that don’t stretch and move like healthy tissue. Instead, those tissues shorten and stiffen, and make it hard for Avery to function. The contractures are sometimes so strong that surgery is only a temporary fix for her.

Despite her challenges, Avery strives to be as active as possible, especially when it comes to helping other with muscular dystrophy.

She most recently participated in the Muscle Walk in New Orleans, where she raised $739 as part of a friend’s team — the TNT Gators. As a little kid, she was a Goodwill Ambassador for MDA and attended the MDA Summer Camp for nine years straight.

Avery remembers one MDA Shamrock campaign at a local drug store, where she was mentioned by name. Instead of people being asked to donate to send a kid to camp, people were asked to help send Avery to camp.

She’ll never forget it.

“It’s [about putting] ourselves out there, so that people can see, hey, we are real people. We are involved in the community,” she says. “We just need to spread the word about MDA, and spread more information about it, so that way we can get more people talking about it. Get more people to know about it and with more people knowing about it, then hopefully we can have more chance for a cure.”

Avery said that she learned something very important from MDA that has followed her throughout her life.

“MDA taught us not to focus on our disability, but rather the ability,” she says. “Like, don’t focus on what you can’t do, don’t focus on quitting, just focus on the end and making your way through it. You might have to change it, but that’s part of your ability, just finding a way to where you can do it.”

Avery has taken that lesson to heart.

During her week-long summer adventure, Avery completed a 10-mile hike to Bear Lake with help from her brother-in-law. During the hike, she climbed so high that she was looking down at the tops of the trees she had just walked under. At the top, the lake was still, like glass. It was beautiful, and the hike was worth it.

“They gave me the option at the halfway point to turn around and go back and wait for the group, but I said, ‘No, I want to go to the top. I can see myself finishing this hike,'” she says. “So, I don’t really see backing out as an option for me. In everything, I always see myself finishing it. It might take me longer than everyone else, but I’m going to finish it for me and to prove to myself that, hey, I can do it.”

Soon, she’ll be heading off to college, four hours away from her family. She’ll be living independently and studying to be a child life specialist, to help kids who are in the hospital.

“Living with muscular dystrophy, you have to find a way to make it to where you can do it,” she said. “I’m really going to have to stay true to that next year, when I’m really on my own at Louisiana Tech.”

But before heading to college, Avery spent another week in Colorado with her family. This year, Avery did not end up upside-down during the rock climbing challenge. She was very much right-side up the whole time — and she went straight up, too.

This time Avery climbed up the rock face and rappelled down, just as her friends and her family had done.

She felt a kinship with them and an appreciation for the difficulties they faced, as she finally climbed in their footprints. She also felt proud of herself. Her boost of confidence could have pierced the clouds.

She felt strong.

She felt unlimited.