Six-year-old Casselton girl deals with daily routine to fend off effects of cystic fibrosisCASSELTON, N.D. – Logan Hahn acts like any other 6-year-old, happily chatting about herself while drawing a unicorn surrounded by mountains and a fairy.
By: Tracy Frank, INFORUM
How to help
What: Blow Away Cystic Fibrosis 2012 Great Strides walk
Benefits: Cystic Fibrosis Foundation
Where: Rabanus Park, 4315 18th Ave. S., Fargo
When: 10 a.m. May 5. (Check-in is at 9 a.m.)
Donate: You can donate to help the Logan’s Heroes team reach its $10,000 goal by going to: greatstrides.cff.org and entering Chris Hahn or James Parker in the “Find a Walker” link.
Additional fundraiser: Jim Parker, a family friend, is running a 5K backwards called: "Running Backward to Move Forward for Cystic Fibrosis" at 9 a.m. Saturday at Minnesota State University Moorhead as part of the Dragon Races. Donate on his page at the Cystic Fibrosis Foundation Great Strides website.
CASSELTON, N.D. – Logan Hahn acts like any other 6-year-old, happily chatting about herself while drawing a unicorn surrounded by mountains and a fairy.
But she does it while her voice is muffled by a facemask delivering specialized antibiotics. She shakes from a vibrating vest that helps rid the mucus, germs and bacteria from her body. And she talks about the enzymes she swallows in pill form before eating to help her body absorb her food.
Logan was born with cystic fibrosis, a life-threatening genetic disease that causes thick, sticky mucus to build up in the lungs, digestive tract and other areas of the body.
The mucus buildup can lead to lung infections and serious digestion problems.
But for Logan, the disease is just a part of who she is. She has to spend about two hours a day hooked up to the Vest Airway Clearance System. And she’s decked it out in a hot pink and black leopard print. She’s also proud of the fact that at 6 years old, she can already swallow multiple pills at once.
“We love her free spirit,” said Nikki Hahn, Logan’s mom. “She doesn’t take anything too seriously.”
Doctors found Logan’s cystic fibrosis through a newborn blood test.
“The thing that resonates with me is they said go ahead and make plans,” Nikki said. “I remember asking, ‘What does that mean?’ It was go ahead and make plans for her to go to school. And go ahead and make plans for her to make it to high school and possibly to college.”
At the time, Nikki knew of a couple kids with cystic fibrosis from the dental office where she worked and Chris Hahn, Logan’s dad, had one student with the disease at the charter school where he worked.
“I never thought it would ever affect me,” he said.
About 30,000 children and adults in the U.S. have cystic fibrosis, according to the Cystic Fibrosis Foundation. In the 1950s, few children with the disease lived long enough to attend elementary school. Now, medical advances are extending life for people with the disease into their 30s, 40s and beyond, according to the foundation.
Nikki said she was devastated when she found out Logan has cystic fibrosis because she’d wanted to have lots of kids.
“Our genetics don’t work together very well,” she said. “The chance of having us another one with cystic fibrosis is very high.”
A person with cystic fibrosis must have inherited two defective genes – one from each parent, according to the U.S. National Library of Medicine.
“I was never afraid for her though because I honestly believe that we’ll be OK,” Nikki said. “We have a child who we try to appreciate every single day.”
They adopted their second daughter, Aftyn, who is now 4 years old. Aftyn likes to look after her big sister, Nikki said.
“She’s such a caregiver,” Nikki said. “She takes care of Logan.”
They Hahns moved from Colorado to the area to be closer to Nikki’s family. She is originally from Barnesville, Minn. They now live in Casselton, where Chris works as a physical education teacher at Central Cass.
Nikki is a part-time clinical dental hygienist. She also works with TNT Kids Fitness in Fargo and does accounting work from home.
Their backgrounds have come in handy in caring for Logan.
Nikki monitors Logan’s diet very closely. She has to count her calories and make sure she’s getting enough of protein and fat.
Exercise is also important to keep Logan’s lungs healthy.
“We’ve never missed a treatment. We’ve never missed a medication. If she needs it, we find a way to pay for it,” Nikki said. “Diet and exercise is huge in our family. We feed her really well.”
Logan doesn’t even eat candy, by her own choice, because she knows it’s not the best choice for her body, Nikki said.
Every few months they go to the University of Minnesota Cystic Fibrosis Center in Minneapolis where Logan sees a lung doctor, dietician and an ear, nose and throat specialist.
She has antibiotics squirted into her sinuses every three months, and she has to take steroids to shrink the polyps that form there. Logan had sinus surgery when she was 2.
“That was probably our first real picture of what could get into her lungs because she got very sick after that,” Nikki said.
Sinus surgery is something she may have to go through every few years, Chris said.
Logan has been going through the daily vest treatments since she was a year old. Before that, her mom would have to drum on her back, chest and sides for 45 minutes twice a day to try to clear her lungs.
Until she was 3, one of the Hahns would have to hold their daughter on their lap until she was done with her treatment. Now, she does homework, draws pictures or watches TV when she’s strapped into the vest.
Logan started kindergarten this year, which means extra precautions.
“It’s very difficult,” Nikki said. “Logan technically shouldn’t be any closer than three feet from a child who is coughing or has a cold.”
Logan’s teacher sent a letter home with the other kids explaining Logan’s situation and asking parents not to send their child to school with an active cough or a runny nose they can’t handle. There’s also hand sanitizer in the classroom, and they use disinfecting wipes to clean the surfaces.
Logan’s medications and treatments are expensive. The vest system alone was $16,000. Insurance covers some costs, but Nikki is constantly on the phone finding ways to pay for the medications and treatments her daughter needs.
Logan is starting a clinical trial on new medication this week at the University of Minnesota. The drug is supposed to help her symptoms dramatically, Nikki said.
“The adults who did this trial said within seven days they had more energy than they’ve ever had in their life,” Nikki said. “I’m excited.”