Former skier and Life Turns Aspen co-founder uses camps to empower children with medical conditions
Among the nine children, cerebral palsy was the most prevalent medical condition. The neurological disorder is a byproduct of brain damage — often developing as a child’s brain is still growing — and can affect body movement and muscle coordination.
On the outside, the disorder can be noticeable. On the inside, the children remain children, full of joy and wonder despite everything.
“When we were in the car driving for this trip, they talked about it. They talked about how people respond to them and what that is like,” Allison Daily said. “Ava, she was talking and she said, ‘My brain thinks everything about me is perfect and normal, but my body doesn’t agree with me.’”
Ava, 12, was among the small group of Front Range children to take part in the Life Turns Aspen camp last week. Ranging from age 12 to 15, the Children’s Hospital Colorado patients experienced a three-day rafting trip, horseback riding and the simplicity of sleeping in a tent under the stars.
For many, it was their first time away from home and away from their parents. Along with cerebral palsy, medical conditions for this particular group of three girls and six boys also included autism and Kabuki syndrome.
“It’s pretty funny to watch the parents and the kids. The parents are usually more nervous,” Max Mancini said. “The ultimate goal is for these kids to have a support network going home, so they can challenge themselves and get out of their comfort zones and learn how capable and independent they can be. We try to empower them.”
Mancini co-founded Life Turns Aspen in 2008 with his wife, Aspen’s Jen Schumacher. On and off since, they have put on both summer and winter camps for children with medical challenges, including cancer and amputations. Last week’s camp was the first time they had partnered with Pathfinders, an Aspen-based nonprofit that supports cancer and chronically ill patients. Daily is the organization’s director.
“I could tell you who is the craziest person at this camp. It’s that guy, Max,” Ava said Thursday at their campsite near El Jebel, the final day of their trip.
Turning his life around
Mancini’s tale is at the heart of Life Turns. He grew up in Crested Butte, attended Colorado Rocky Mountain School and was an accomplished skier, having been featured in multiple Warren Miller films. The name of his organization comes from events in one’s life that cause it to “turn course,” for better or worse.
For Mancini, his life-turning event occurred in September 2007 when he barely survived a car crash on Highway 285 near Fairplay. His girlfriend, 24-year-old Molly Jackson, who was six-months pregnant, died at the scene of the accident, as did the unborn child.
While he survived, Mancini did suffer severe head trauma that led to lingering neurological problems long after the accident. In a 2009 article by ESPN, Mancini talked about how skiing was the only thing that got him through the ordeal.
And get through it he did. He married Schumacher, co-founded Life Turns, and a few years ago both he and his wife earned their master’s degrees in psychology from Pacifica Graduate Institute. Mancini said his job as a psychotherapist and years of counseling allow him to talk about his accident.
Today, the Woody Creek resident uses his past to help create a better present — and hopefully future — for children who need it.
“We have these camps to help increase self esteem and build confidence in children living with medical challenges,” Mancini said Thursday. “We like to do everything for free for the families. They have huge medical bills and they put up with so much already, it’s great to take the kids for free and the parents get a break. For some of our campers, it’s their first night away from home.”
A moving week
With the help of Daily and Pathfinders, along with a handful of other volunteers, Life Turns picked the children up July 23 in Denver and brought them over Independence Pass where they hiked and camped at Difficult Campground. On Monday they went horseback riding with WindWalkers Equine Assisted Learning and Therapy Center before camping on a spot of land in El Jebel owned by David Moray.
Tuesday through Thursday, they went rafting on the Ruby-Horsethief section of the Colorado River. Thursday night they again camped on Moray’s land before returning home Friday. The Aspen School District loaned them a pair of suburbans to help make it possible.
“It’s been the most moving week. These kids are unbelievable,” Daily said. “I would say half these kids have never been on a river. I’d say half of them have never been away from their parents. They’ve never had an opportunity to do something like this.
“Some of the parents, when we were talking to them on the phone, were crying with joy because they couldn’t believe their kids were going to get an opportunity like this. That means so much.”
As the children relaxed in El Jebel on Thursday afternoon after a long few days on the Colorado River, some drawing while others played in the small creek running through the property, it was apparent the camp did what it intended. The impact of the camp was obvious from child to child, with each of them having their own favorite part.
Lily, 14, enjoyed staying in a tent for the first time. Her brother, 12-year-old Noal, loved getting to raft on a river for the first time. And Ava? Well, she just wants to be in the water, and hopefully far away from those pesky mosquitoes that left more than a few marks on the children.
“I love swimming, I can say that. I did like the rafting part, but I loved the swimming part. I don’t mind (the cold water). If it’s summer time I don’t care because it’s hot,” Ava said with delight. “My worst part is being bitten by mosquitoes. Make sure you wear a lot of bug spray so they don’t eat you.”
For more information, visit http://www.lifeturnsaspen.org. Mancini and Daily hope to continue their partnership going forward. Challenge Aspen also has expressed interest in getting involved with the winter camps.
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