Sky-high hopes, down-to-earth ingenuity: Volunteers build a tree house for children with special needs

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Sky-high hopes, down-to-earth ingenuity: Volunteers build a tree house for children with special needs
BY MARTY HAIR
FREE PRESS STAFF WRITER

May 13, 2003



Twelve-year-old Alex Gardner always dreamed about being inside a tree house. But because he uses a wheelchair and a ventilator, he assumed that a tree house would remain forever beyond his reach.

ABOUT THE CAMP
Trail's Edge Camp is a nonprofit organization that operates an annual five-day summer camp at no cost to children who use ventilators.
To make a tax-deductible contribution to the camp or to its campaign to build the barrier-free tree house, send a check made out to Trail's Edge Camp to Room 5815, Box 0208, 200 E. Hospital Drive, Ann Arbor 48103.

Families who wish to learn more about Trail's Edge Camp will find details on its Web site, www.umich.edu/~tecamp, or they may call Mary Dekeon at 734-936-7339 anytime. By Marty Hair



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THE TREE HOUSE SONG
copyright Laszlo Slomovits

This is the first stanza of a song that Laszlo Slomovits of the singing group Gemini recently wrote for Trail's Edge Camp:

Empty wheelchairs under the tree

I can be free

I am free

When I come down, I'll take home with me

A sweet memory

I am free

His dream should be realized this summer, however, when a barrier-free tree house -- believed to be the nation's first for ventilator-dependent children -- opens at Trail's Edge Camp near Mayville in Michigan's Thumb.

Volunteers are laboring to complete the tree house by June 1, when Alex and 30 other youngsters ages 4 to 18 will arrive for camp for pediatric respiratory patients. All the campers use ventilators, and half also use wheelchairs.

Via e-mail, campers are buzzing about the tree house. Designed by a University of Michigan architect, a structural engineer and two graduate students, the tree house is rising on a branching column of stainless steel next to a 60-year-old red maple deep in the woods.

"It's hard to imagine the tree house. I bet it's going to be really cool," says Alex, a Shelby Township sixth-grader who was born with a severe muscle disorder.

Regardless of physical capacity, campers will enter the tree house the same way: strapped into a harness and hoisted by rope. They'll move around inside while sitting on a wide seat that's similar to a ski chairlift. It will be suspended from a ceiling track and pushed by others.

"We really want to make this a wonderful place where no person can't come," says Mary Dekeon, director of Trail's Edge camp and a pediatric respiratory therapist at the University of Michigan's C.S. Mott Children's Hospital in Ann Arbor.

Built with volunteer labor and donated money and materials, the tree house will be the centerpiece of this 14th session of Trail's Edge Camp, which has been a model for other camps for pediatric ventilator patients around the country.

The idea for it came to Dekeon while she was running a support group for parents of her medically fragile patients. One mother said her life would be bearable if she knew she'd get a few days of rest each year.

"It haunted me," Dekeon says. "I thought, 'She's talking about a camp,' " so Dekeon and five coworkers organized one for their Mott patients. While giving parents a break, the so-called vent camp would let the youngsters meet others with conditions like congenital heart disease, Down's syndrome, multiple birth anomalies, dwarfism, spinal muscular atrophy, spinal cord injury, muscular dystrophy and central sleep hypoventilation syndrome. With medical supervision, campers could share time outdoors, away from homes and doctors offices, and participate in summer camp activities they might never sample otherwise.

Organizers found the location at the Fowler Center, a nonprofit facility on 200 acres in the Thumb that promotes barrier-free outdoor learning. It allows Trail's Edge to offer fishing, boating, sports, hayrides, campfires, crafts, horseback riding and sing-alongs. Cabins are accessible and the 1 1/2 miles of nature trails are paved so they're easy to navigate for people in wheelchairs.

The organizers found 48 volunteers, among them doctors, nurses, respiratory and physical therapists and social workers, who offered to use vacation time from work to staff the camp. Eighteen campers came the first year.

"Every person there, it changed their lives," Dekeon says. Many have returned each year, and this year's staff will number 95, about two-third of them medical professionals.

Kelly Gardner, Alex's mother, says, "My heart is so full when I imagine the volunteers that are coming year after year, the freedom it allows the kids."

The camp is free for patients and their families, with the $40,000-a-year cost paid by benefactors including FRIENDS of the University of Michigan Hospitals and Health Centers, the Zukey Lake Tavern Golf Outing and others.

Each year, the Trail's Edge staff surprises the campers with something new -- a ride in a private plane or a hot-air balloon or on the back of a Harley. Last year, it was recreational tree climbing. Alex says it seemed scary but when he saw others, he decided to try it, too, and loved it.

Buoyed by that success, Dekeon and Fowler Center executive director Tom Hussmann wondered whether they could build a permanent tree house. They had some money donated for the camp in memory of Craig VanLaanen, a Mott respiratory therapist and an organizer of Trail's Edge. VanLaanen died in 1997 of cystic fibrosis while awaiting a lung transplant.

Dekeon called the U-M College of Architecture and Urban Planning, where the dean asked lecturer Kristine Synnes whether she'd like to design a tree house. She agreed, adding, "Then I met Mary and I realized this is going to be an extraordinary tree house."

Synnes set up a class called Tree House Building, and graduate students Mark Weston and Cathy Maurer enrolled, working on the design with Synnes and Peter von Buelow, assistant professor of architecture and a structural engineer. He proposed the branching column to support the load in the 11-by-33-foot wooden tree house.

"Originally we were looking at a series of poles," von Buelow says. "This just seemed like a lot more in the spirit of a tree house."

Back in the Thumb, meanwhile, consulting arborist Kay Sicheneder of Owen Tree Service in Attica examined the maple and pruned it. Because the tree is not strong enough to support a tree house, the structure will rise next to the tree and a wooden platform will extend into the tree's canopy, but not rest on it.

The tree house will cost about $80,000, more than half of which has been raised. Many materials as well as labor are being donated. Working all winter, volunteers built a wooden boardwalk. They picked up the pace this spring, camping at the Fowler Center to work each weekend.

"I just can't believe how much amazing caring this group of volunteers possesses. It's just unbridled love," says Karl Pearson, who drives from East Lansing to help out. He and another volunteer, Norbert Leppanen of Farmington, say their payoff will be seeing campers' faces when they glimpse the tree house in June.

Of course, there have been setbacks. A few companies declined to get involved because of potential liability. The soil around the tree house turned out to be unexpectedly soft and sandy so the foundation has had to be redesigned twice. The company making the ceiling track went out of business, so the tree house's wide seats may temporarily have wheels.

But Dekeon vows the dedication will go on as scheduled June 1, when campers and their families will gather in the rolling woods near Harmon Lake to christen the Craig VanLaanen Memorial Tree House and Woodland Retreat.

Dekeon's dream-come-true will be seeing the campers freed to experience life aloft, leaving their empty wheelchairs behind.

And Alex Gardner can't wait to be up there.



Contact MARTY HAIR at 313-222-2005 or hair@freepress.com.

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