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ryan mcgaughey/daily globe Tarryn Joens was one of the 3- and 4-year-old first-year dancers performing in The Dance Academy's spring recital Friday and Saturday at Worthington's Memorial Auditorium.

Dance Academy preschooler battles cystic fibrosis

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Dance Academy preschooler battles cystic fibrosis
Worthington Minnesota 300 11th Street / P.O. Box 639 56187

WORTHINGTON -- Each September since 1996, Kay Williams Prunty of Worthington's The Dance Academy begins instructing her 200-some students in the basics of tap, ballet and modern dance, always anticipating the culminating May recital weekend at Memorial Auditorium.

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This past Friday and Saturday, Tarryn Joens was among Prunty's 3- and 4-year-old first-year dancers performing in the 15th annual dance extravaganza.

Tarryn, the daughter of Amber and Phillip Joens, Reading, was born with cystic fibrosis, an inherited disease that causes thick, sticky mucus to build up in one's lungs and obstructs the pancreas in its absorption of essential nutrients. As a result, Tarryn undergoes a daily regimen of medications and vibration therapy to keep her lungs clear and her pancreas functioning.

Nevertheless, Joens gleefully took her place among the frothy yellow-skirted girls in her group to perform delightful routines to "You Are My Sunshine" "Itsy Bitsy Teenie Weenie Yellow Polka Dot Bikini" and "Ugly Bug Ball," spinning around in her ballet shoes and turning a beginning cartwheel with gusto.

"She loves music and dancing, and she loves her costume," said Amber Joens of her daughter. "She calls her costume her 'sunshine dress.'"

Such a positive comment is indicative of Tarryn's generally upbeat outlook, for while other dancers were worried primarily about getting their hair and makeup ready before the performances, Tarryn had to also make sure to wear her vibrating vest for 30 minutes, as she does twice each day, so her lungs would not fill with sticky mucus.

"We tweak her schedule a bit when something special like this is going on," Joens said. "She has learned to roll with it -- she even reminds us once in awhile that it's time to take a medication.

"She's very good about it, but sometimes, like with any kid, she would prefer to play, but this is what you have to do."

Joens enrolled Tarryn in Prunty's dance classes last fall, having had good experiences herself with dance instruction from grades three through nine.

"She always enjoys going to her dance class, and she has a cousin in dance," observed Joens. "It seemed a natural thing to sign her up."

For the 2011 dance shows, Prunty chose the theme "Fun in the Sun," explaining, "I love everything about warmth, the sun, the beach -- the colors, the flowers, the songs related to those things just make people happy, so the bulk of the program followed that idea.

"There were songs like 'Beach Baby,' 'Lovely Hula Hands,' 'Island Princesses,' 'Surfin' USA' and 'Wipeout.'"

In 2010, Prunty's dancers were the last to appear on stage at Memorial Auditorium before it closed for the lobby addition and upgrades. While Prunty was looking forward to the comfort the new air conditioning system could provide for dozens of active dancers and three full houses, cooler weather and rain prevailed, making the expanded lobby facilities greatly appreciated.

In the 15 years since Prunty opened The Dance Academy, she has had only one other dancer with cystic fibrosis, and initially she wasn't aware Tarryn was afflicted with it.

"She's an amazing little girl, and I didn't even know she suffered from it at first," explained Prunty. "I heard from another dance parent that her family was going to be involved with a fundraising walk in June, and I was willing to help make others aware of that."

Indeed, the Joens family has participated in Great Strides, the Cystic Fibrosis Foundation's largest national fundraising event, ever since they learned, when Tarryn was an infant, that she had the disease.

"It was a huge shock to find out, but when she was about four months old Tarryn wasn't gaining weight, and they diagnosed her with a sweat test.

"With CF, people sweat out all their salt because the pancreas doesn't function properly, and Tarryn's test came back positive," explained Joens, whose family now also includes 2-year-old son Brandt. "We went through a lot of emotions then--I mean, she was our first child--but once they started her on enzymes, it helped with food digestion and right away you could see a difference and she was a happier baby."

Today, the life expectancy for a cystic fibrosis sufferer has climbed to 37 years, which is a huge advancement over previous decades. That rapid growth in life expectancy is what makes the Great Strides walk such a priority for the Joens family.

"It's a great way to raise money for cystic fibrosis research and to fund new medications they're trying to develop that will help expand life expectancies," offered Joens, who clearly has a keen interest in seeing her daughter live a happy and productive life for as long as possible.

Joens proceeds with faith and hope that Tarryn may someday be among the dancers, like Samantha Thuringer, Ellen Dudley, Lexi Standafer, Sarah Cham, Junior Nguyen, Matthew Steffl, Joey Kinley and Isidora Radovanovic, who collectively have danced with Prunty for nearly 65 years and are now preparing for their imminent high school graduations.

"They will be missed," professed Prunty, who has coached some of those seniors since they were in preschool, as Tarryn is now. "They become like family, and it's always hard to let them go, but it's so much fun when they come back and visit."

June 4 is the date the Joens family will participate in Great Strides in Sioux Falls, S.D., and pledges/contributions to their effort are welcomed.

"We make sure we sign up and do it every year, because it's very important to us," confirmed Joens. "We try to get our friends and family involved and raise as much money as we can to try and help."

Prunty, for one, is appreciative that the Joens family makes time both for dance and for supporting cystic fibrosis research.

"Tarryn is a sweetheart, and she's been a joy to teach," noted Prunty. "We're so fortunate to have great supporters of dance in this community, and anything we can do for the arts or to help other causes that affect our community members -- autism, breast cancer awareness, cystic fibrosis research, the local food shelves -- we're happy to do."

Joens says her family takes Tarryn's disease and its consequences, which include having Tarryn swallow 18 pills daily, on a day-by-day basis.

"She is an adaptable child who is very outgoing and doesn't have too many physical limitations," shared Joens. "On the outside, she pretty much looks like any 4-year-old, but it's what's on the inside, what affects her lungs and her pancreas, that's different."

To donate to the Joens' Great Strides walk to benefit the Cystic Fibrosis Foundation, visit www.cff.org/greatstrides/amberjoens, or send a check (payable to the Cystic Fibrosis Foundation) in care of the Joens Family, 18539 Lais Ave., Reading 56165. For more information about upcoming summer or academic-year classes at The Dance Academy of Worthington, call 376-5237.

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