140 year of Shriners

140 year of Shriners

Friday, February 6, 2015

Teenage amputees learn balance, gain confidence at ski camp




PARK CITY,Ut —By Deseret News
 Nicole Davis had no control over how she was born, and doctors said she almost didn't make it.
But Thursday morning, the 18-year-old continued to defy the odds as she came swooshing down the slopes atPark City Mountain Resort.
"There have been times in my life when I need to take a break before everyone else does, but usually I don't let it slow me down," she said.
Davis was born with amniotic band syndrome, meaning her mother's uterus had insufficient amniotic fluid, leaving her limbs constricted with fibrous strands that are left in utero from the ruptured sack. Davis' right leg, toes on both feet and fingers on both hands were tightly wrapped upon birth, and she also had a club foot.
Doctors didn't believe she would survive her first night, let alone learn to walk or live a normal life.
"I got very lucky," Davis said.
Since her birth, however, thanks to close to two dozen surgeries at Shriners Hospitals for Children, the bright-eyed teenager has done anything and everything anyone else her age can do.
"I've run several 5Ks, played soccer in the third grade and was on the school basketball team my freshman year," Davis said.
And now that she knows how to ski, she hopes to continue to do that as well.
Davis, of Provo, is one of 17 teens with limb deficiencies or limb loss from across the United States and beyond who took part in Shriners' annual Un-limb-ited Camp, which gives the patients an opportunity to enjoy different forms of outdoor recreation without having to think about their physical disability.
"Teens face a lot of challenging issues anyway. … They shouldn't have to worry about how their bodies might hold them back from doing something they see others do," said Matthew Lowell, co-director of the camp. "In every sense, they are unlimited. They just have to figure out how to do it.
"It's challenging, just like it is for everyone to learn something new. They just have to learn a different way to make it happen," Lowell said.
The program, which covers the cost of instruction, equipment, food, lodging and activities for participants, has assisted some now-famous paralympic athletes in finding and pursuing their dreams. It also gives teens a chance to mingle and befriend other amputees their age.
Elizabeth Sweeten, of Logan, said she had never met another person with an amputation, but she has already made lasting friendships with other kids participating in the five-day amputee camp.
Sweeten said it has opened her eyes to the negativity that some kids face being different, as she doesn't feel like anyone has ever treated her any differently for her condition.
"I've never been teased," she said. "It's strange to hear the stories about what people have faced, but it teaches me about the ways they learn to respond to that negativity."
Sweeten, 15, was born missing a part of her left leg, requiring a prosthetic before she started walking.
"It's super natural for me," she said. "It's just a part of me. I don't think of it any differently."
Sweeten's prosthetic leg was tethered to her belt so it wouldn't fall off or loosen when she hopped on and rode the ski lift. Other kids had removed their prosthetic limbs — arms and/or legs — to learn to ski without them.
Jesse Brown, who came to Utah from the Tri-Cities area of Washington state, lost his leg to bone cancer at age 10. He said his dad has worked as a ski patroller and "wouldn't believe how good I am if he couldn't see it for himself."
"I've been told this week that with a bit of practice, I could go pro," the 17-year-old amputee said.
Brown's amputation has become so normal for him that he often jokes with kids who ask about it that he's "a transformer."
Brown didn't wear his prosthetic leg while he skied and hardly used the outriggers — an adaptation of a forearm crutch and a shortened ski — to balance. He prefered unrestricted motion and speed when coming down the snow-covered mountains.
"I remember they told me I'd never rock-climb again, and I did that like a month after I got my leg amputated," Brown said.
He's attended three of Shriners' Un-limb-ited camps and aspires to work as a pediatric anesthesiologist so he can inspire other kids to accomplish their dreams.
"I want them to look at me and see what I've been through and know that they can get through whatever they have to, even if it is worse than me," Brown said.
Un-limb-ited participants are selected through an application process that includes an essay where kids must write about their experience being an amputee. The program started 11 years ago with 10 kids, all Shriners patients, and has grown to include more each year.
Lowell said he hates for kids to miss out on the opportunity, which is supported by various partnerships, including with the National Ability Centerthat is located at the Park City resort.
"We all have different abilities. Theirs just happens to be that they are missing an arm or a leg," said Gail Loveland, executive director at the center. "We want them to have a way to help build their self-esteem, their self-confidence and develop lifetime skills."
The facility provides expert training for various sports to people of varying abilities, including people with mental or physical deficiencies, as well as those who are aging.
Recreation, much like most communities, Loveland said, has adapted through the years to welcome all kinds of differences.
"We love to see this as a jumping off point to where they're going to take their lives," she said. "This is a new normal for them, especially those who are recent amputees. We tell them, 'You're normal. It's just a little new.'"

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