MONTE VISTA — The Sand Dunes Shrine Club relies on the sale of Shrine Circus tickets to replenish the funds they use to help Valley kids with transportation to Shrine hospitals. Twelve-year-old Urianna (“Uri”) Acosta is one of them.
Acosta was born with a condition called arthrogryposis multiplex congenta (AMC), a stiffening of the bones that affects about 1 in 3,000 individuals. Technically, it “describes congenital joint contractures in two or more areas of the body.” All four of Acosta’s limbs were affected. At birth her arms were stiff and did not bend and her legs were tucked up against her body. Her thumbs were bent forward against the palms of her hands.
“My mother’s womb was too small for me. So I was stuck in the position where my legs were crisscrossed and my wrists were bent,” said Acosta. Although AMC is physically limiting, it has not been painful for Acosta. “Other than surgeries, I have never had pain with this condition,” she said.
As a toddler, she would sit on her bottom and sort of hop and scoot to get around, but when her “Pama” got her a little chair, Acosta quickly figured out a way to use the chair for support and walk on her knees. “Pama” is the affectionate name all her grandchildren and “half of Monte Vista” now call Linda Archuleta because that’s what her first grandchild called her when he couldn’t pronounce “grandma.”
Archuleta, who has been raising Acosta since she was 3, researched AMC and found a world-renowned doctor who works not only at the Shriner Hospital in Philadelphia but in clinics worldwide. His name is Dr. Harold vanBosse. He is having incredible success helping those born with AMC.
Meanwhile, Archuleta met Dick and Susan Smith who live in Monte Vista. Dick is a Shriner and he suggested they apply for help from the local Sand Dunes Shrine Club. Archuleta followed up and the club is helping to defray their travel costs. It took two years to get Acosta in for her first surgery with Dr. vanBosse.
Previously, at one hospital, Acosta was told there was not much they could do for her. At another, amputation of her legs was suggested, but she told the doctors, “I want to walk with my real legs.”
“Thanks to Dr. vanBosse, Acosta’s hip, knees and legs are now in the right positions. They’ll have to do a little more work on her feet,” said Archuleta. “In an eight hour surgery her hips and feet were moved into correct positions. Her ankle was turned 90 degrees and then her foot was turned another 90 degrees.”
Acosta added, “It’s almost like my foot was on backwards. My hips were outward and he aligned them with my knees. I had one foot in the front and one in the back. One of my feet points down and one points up and they are still crooked. My feet were so tiny, so so tiny, but they’re pretty big now,” said Acosta who is very knowledgeable and well spoken about her condition.
“She went from a size six infant to a size 12 youth after the surgeries,” explained Archuleta.
“On August 17 they are going to put a fixator on my knee,” explained Acosta. “Every day I will click it and it will straighten my leg out little by little and in three months my leg will be straight.” The same process will be used to straighten her other leg and both feet. Acosta and her “Pama” will remain in Philadelphia for eight months until this process is completed.
“We think that by the time we come home, she will have braces and will probably be walking with a walker,” Archuleta said.
“I’m pretty excited,” responded Acosta. “I’m really excited actually!”
“I have dreams about it,” said Archuleta. “She looks absolutely beautiful standing and walking and doing the things that we do. She does the things that we do now but she does them different.”
Acosta is experiencing many firsts. With her legs released and aligned with her knees, she can now wear jeans. She can move her body in ways she never could before as she dances while sitting in her scooter. Acosta has her sights set on possibly being a choreographer or maybe joining the military. “Do you know who Justin Bieber is?” she asked. “He sings and he dances too. I want to do that.” For someone whose body was so restricted, Acosta is dreaming big.
“I will encourage anything that she chooses to do,” Archuleta said.
“When she was in the hospital, she performed for the staff,” said Archuleta. “They had a music therapist and she worked a lot with Uri.”
When Monte Vista policeman Dave Pino heard that Acosta likes to sing, he went to her classroom, asked to speak with her and invited her to sing the National Anthem at the annual Police Memorial in May 2016. She sang the song A cappella (with no musical accompaniment).
Acosta’s future is looking much brighter although with her positive outlook, it isn’t likely that anything could hold her back.
“Nothing stops Urianna,” Archuleta said.
Monte Vista Middle School Principal Tom Tichy said, “She absolutely loves school and hates to miss. She’s very self-motivated. The kids love her and she loves being around them. She’s a very extroverted, out-going young lady. She’s a joy.”
Adam Atencio, the Monte Vista Middle School resource teacher, said, “Uri is one smart kid. She’s very independent. She always strives to get good grades and is conscientious about the work she turns in. She does a really good job academically. I don’t think you could ask for a better student. She’s always on top of it. She learns so fast. She looks at her whole life in a positive way. She doesn’t complain. She always has a smile on her face. She’s able to think so level-headed that her maturity is far beyond her years.”
Acosta is innovative. To write she holds her pencil between her index and middle fingers on her right hand. She types by using the knuckle of her index finger on the same hand.
Her social studies teacher, Brittany Kwiatkowski, said, “She’s very outgoing. Considering Social Studies is first hour in the morning, it’s hard to get some kids enthusiastic and energetic, but she is. She’s ready to share. She’s very polite. She’s a natural leader and a hard worker.”
“I thank God every day that he found favor with me and I have been able to raise her,” said Archuleta who spoke highly about Shriners. “Uri was in the hospital for a whole month and had all these surgeries and we didn’t pay a penny,” she said. “The Shriners paid for the adjustments on her scooter that her insurance wouldn’t approve. While we were there, they had Christmas in July. They had gifts for all the kids.”
She continued, “People need to know they have specialty doctors and they’re the best doctors, not just the best doctors in Philly, but the best doctors in the world. What we are experiencing is just unreal. I can truly say our experience was one of the most awesome experiences we have ever had – the people we met, the treatment, the bedside manner. It’s all about the children.”
Most kids enjoy circus entertainment, but the Shrine Circus has a special purpose. The proceeds from buying tickets for the Shrine Circus will help the Sand Dunes Shrine Club continue to send Valley kids to Shriner hospitals. This year the circus is Friday, June 2, at the Ski-Hi Park in Monte Vista with performances at 2 and 7 p.m. Tickets cost $5 for children and $10 for adults and can be purchased in Alamosa at: Best Little Meat House, City Market, Monterey Café, Narrow Gauge Bookstore, Rio Grande Savings and Loan, Safeway and Southern Peaks Library. In Monte Vista they can be purchased at the Monte Villa Inn, Safeway, Top Value and Rocky Mountain Plumbing Supplies.
There are 22 Shriner Hospital locations in the United States, Canada and Mexico which provide advanced care for children with orthopaedic conditions, burns, spinal cord injuries, and cleft lip and palate. When a child is accepted as a Shriner patient, there is no charge for the care received. However, if a patient has insurance, that may help defray hospital costs. The majority of children from the San Luis Valley who have gone to a Shriner Hospital either go to the hospital in Galveston, Texas where their specialty is treating burns or to Salt Lake City, Utah, where their specialty is treating orthopedic (bone) problems. Children up to age 18 can apply for admission to a Shriner Hospital.
Acosta is being treated at the Shriner Hospital in Philadelphia where world-renowned Dr. vanBosse continues to reduce her physical restrictions one treatment at a time.
To investigate patient referral eligibility, call 1-800-237-5055 or for contact information about Shriners, call 1-800-241-4438. Or call local Shriner Dick Smith at 719-849-1571 or his wife at 719-849-1970 for more information.
Caption: Because her thumb still rests against her palm and has not been released, Acosta demonstrates how she writes while holding her pen between her index and middle fingers on her right hand. She uses the knuckle on that hand to type on a computer. Courtesy photo by Margaret Sanderson