SPRINGDALE – Zelah Farrell has a huge grin on her face.
The 10-year-old girl is swinging from a hammock made of purple fabric — typically used for aerial dancing, Cirque du Soleil-style — in the middle of a small wash just outside Zion National Park. She gazes through the thin material, which casts a purplish hue on the sandstone formations and people who surround her.
Zelah has a rare genetic disorder that has left her unable to speak or to move without assistance. But her father, Springdale resident Russell Farrell, says he can tell from her subtle responses that she is enjoying the experience.
“I feel that she’s quite comfortable,” he says. “She’s as relaxed as she can be.”
Russell had considered introducing Zelah to an experience like this for some time. She tends to enjoy anything that can diminish the pull of gravity on her tiny body — even just swinging in his arms.
But he wanted to take that experience to a different level — to allow his daughter to feel even more.
Then he saw an article in The Spectrum & Daily News about a Springdale-based aerial dancer, Summer Davies, and her boyfriend, Darren Jeffrey, a professional rigger. They regularly collaborate to create aerial dance rigging in exotic locations and had done so in this very canyon with the cliffs of Zion as a backdrop.
Russell decided he wanted to meet Davies and Jeffrey. That’s where Heidi Gledhill came in. Russell is a regular customer at Deep Creek Coffee, a Springdale business where she works. And Gledhill has previously helped Davies and Jeffrey with a rigging for an aerial performance at Lake Powell. She made the introduction at the Zion Canyon Music Festival in September.
Now it’s late October and they are all gathered in the canyon watching Zelah take it all in.
“I think it’s neat how the fabric just kind of hugs the body — creates a safe feeling,” Jeffrey says.
After Zelah experiences the sensation by herself, Davies and Jeffrey modify the rigging, creating a second hammock so Russell can swing below his daughter.
The double-hammock rigging allows the father to massage his daughter’s body while swinging and providing the comfort of human touch.
Russell says the swing provided a completely new sensation for his daughter. The closest thing she had probably experienced before this was lying on a blanket with four people holding each of the corners when she was both younger and smaller.
Zelah’s disorder is called glutaric acidemia type 1. Often shortened to GA1, the disorder means the body is unable to completely break down certain amino acids, leaving excessive levels of breakdown products that accumulate and cause damage to various organs. It kicked in when Zelah was only 13 months old.
Davies and Jeffrey are so excited by the success of the hammock in the wash that they propose installing a similar feature in Russell’s home. He suggests it as Zelah is still swinging in the canyon and later that day it’s a reality.
Now a hammock hangs from a large tripod in Russell’s home, giving Zelah that chance to experience the sensation more often — minus the natural features of the sandstone canyon.
“Zelah enjoys the experience,” Russell says. “I get a feeling she likes texture.”
This experience with Zelah is hopefully just the beginning, Jeffrey says. With so many recreational activities available in Southern Utah, he said he would like to see more companies and organizations with resources coming forward to create other “adaptive activities” for children with special needs.
Kayaking, stand-up paddleboarding and canyoneering are among the activities Jeffrey would like to see adapted for these children with disabilities.
As for Zelah, Russell hopes that she will one day have the opportunity to try a zip-line.
“I can imagine her flying through space and looking at the reactions she might have,” he says.
Even the basics of the hammock swing were gratifying for Davies and Jeffrey to see.
“It just made me feel good that we could give her this experience,” Davies says. “This isn’t an experience that a lot of people get to have.”
The reward of seeing Zelah smile was reward enough for their efforts, Davies says, calling the grin “contagious.”
The question they now have is how to find other children with special needs and connect them with organizations that are willing to step forward and provide adaptive activities.
Davies and Jeffrey are hoping to see companies, including recreation outfitters, throughout Southern Utah follow their lead by developing adaptive program ideas.
If you have a child with special needs that would be interested in an adaptive activity or are an organization willing to provide a program, you can contact Davies at firstname.lastname@example.org or by calling 626-470-7705.
Successful adaptive programs may even be considered for a future story like this in The Spectrum & Daily News.