Cooking up a cure: Girl with CF inspires cookbook projectREADING — Tarryn Joens is enthralled by movies about princesses and unicorns. Her favorite colors are pink and purple, and her favorite foods include macaroni and cheese and corndogs. When it’s nice outside, she likes to ride her bicycle and play on the swingset at her family’s home in rural Reading, and she’ll even let her little brother, Brandt, tag along.
By: Beth Rickers, Worthington Daily Globe
READING — Tarryn Joens is enthralled by movies about princesses and unicorns. Her favorite colors are pink and purple, and her favorite foods include macaroni and cheese and corndogs. When it’s nice outside, she likes to ride her bicycle and play on the swingset at her family’s home in rural Reading, and she’ll even let her little brother, Brandt, tag along.
In so many ways, Tarryn is a typical 5-year-old girl. But there is one thing that sets Tarryn apart from the other children her age.
She has cystic fibrosis.
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. It also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
Tarryn’s parents, Phillip and Amber Joens of rural Reading, had no idea they were carriers of the CF gene until Tarryn was diagnosed at 4 months of age.
“We knew something wasn’t right at her three-month checkup, because she only gained a pound since birth,” recounted Amber. “The doctor made us check her weight every couple days after that since she wasn’t gaining any weight. They did a couple of blood tests on her, and everything came back fine. Next, they did an ultrasound of her heart to see if she had anything wrong with that. When that came back normal, our doctor decided to do a sweat test to test for cystic fibrosis as a last resort.”
People who have cystic fibrosis sweat out the salt in their system. For the diagnostic test, Tarryn was hooked up to electrodes that caused her to sweat, and the amount of salt in the sweat was measured.
“If there’s a high content of salt, that’s pretty much it,” said Amber. “We didn’t know anything about cystic fibrosis, it was just a term you’d heard once in a while. But we started to, though. Now we know more than we want to.”
The Joenses were referred to a CF clinic in Sioux Falls, S.D., where they learned about the special care Tarryn’s condition required.
“Right away she was put on a high-fat, high-salt diet, and she had to take enzymes to help her absorb what she was eating,” detailed Amber. “The enzymes came in pill form and we had to mix them in with applesauce to help her take them. We also learned we had to start doing chest percussion therapy on Tarryn twice a day to help with the buildup of mucus on her lungs, to help open up her airways. It took about 30 minutes for each treatment. The first couple treatments didn’t go so well as Tarryn and I cried through them, but they had to be done, and after a while we both got used to them. After a while she started falling asleep with them, and that made it so easy to flip her from front to back to on her sides.”
Now, at age 5, Tarryn generally dons her therapy vest twice a day without much complaint and also endures regular nebulizer treatments.
“It’s what we do on a daily basis now, just become part of our lives,” said Amber. “Sometimes it’s hard to get her to do her treatments, she gets more obstinate, and it’s hard for her to sit still. But she watches a movie, and that seems to help. But she’s been doing it for five years now. Sometimes she asks if other kids have to have treatments or take pills, and we try to explain the best we can.”
Tarryn’s diet is both high-fat and high-sodium to counteract the depletion of nutrients caused by CF. She also ingests 27 pills each day.
“She started swallowing pills at 3, and now she can take a couple at a time,” Amber noted. “She just shoves them in and takes a drink.”
Not too many years ago, it was rare for CF patients to ever attend school, but Tarryn has just graduated from Sunny Days Preschool in Worthington and looks forward to kindergarten in the fall.
“We just had to make sure the teachers were aware” of Tarryn’s condition, said Amber. “They have a snack each day at preschool, so she took her pills then, swallowed them for the teacher. She has to stay away from kids who are coughing. What’s a normal cough for them is pretty severe for her. If she coughs a lot more, then we have to do a third treatment each day, and if it’s still not gone, we have to call the doctor and get an antibiotic.”
While they have to keep a close eye on Tarryn, Amber and Phillip want her to live as normal a life as possible. She’s also enrolled in the Dance Academy and recently participated in its annual spring recital, performing three numbers — tap, jazz and ballet.
“I like tap and jazz,” said Tarryn, not showing as much enthusiasm for her ballet number.
“She keeps up with the other kids pretty well,” added Amber. “It’s just that when she gets a cough, it’s more severe.”
Ever since Tarryn’s diagnosis, the Joenses have participated in the Great Strides Walk, a fundraising event for the Cystic Fibrosis Foundation that takes place today in Sioux Falls.
“It’s a time where families can get together and support a wonderful cause — finding a cure for our loved ones,” explained Amber. “It’s nice to go and meet other parents who have children with CF, and even adults, and learn what they go through.”
Earlier this year, the Joenses embarked on a cookbook project to raise money for the Cystic Fibrosis Foundation.
“Phillip’s sister came to us with the idea,” said Amber, crediting sister-in-law Anna Joens. “We thought it would be a good idea. Who doesn’t love a cookbook? So we got all our friends and family involved. Anna did most of it. Everybody sent the recipes to her, and she put it all together.”
Published by community cookbook specialist Morris Press of Kearney, Neb., “Treking 4 Tarryn” was eagerly gobbled up by the family and friends. Tarryn’s grandparents, Jim and Joan Joens and Steven and Lenai Engler, helped to spread word, and great-grandfather George Weiland peddled it to area businesses. The first batch of books has sold so well that a second order is anticipated.
“Word of mouth has been our biggest seller, I think,” said Amber.
Today, as the Joenses participate in the Great Strides Walk, they will celebrate the success of their fundraising effort and look forward to a future when someday, hopefully, a cure will be found for cystic fibrosis. The Cystic Fibrosis Foundation’s mission is “Adding Tomorrows Everyday.”
“Right now, there’s no cure. It’s genetic, and Tarryn will have it forever unless they find a cure,” said Amber. “Every year, as she gets older, her lung function decreases. When she gets older, there will be more complications, more pills. But we just take each day as it comes and celebrate all the little milestones.”
To purchase a copy of “Treking 4 Tarryn,” contact Amber Joens, 926-0074; email email@example.com.
Daily Globe Features Editor Beth Rickers can be reached at 376-7327