6-year-old Meehan girl fights back against cystic fibrosis

Published 9:30 pm Saturday, December 3, 2016

Six-year-old Maddie Luke likes playing outside, dressing up her American Girl dolls and cheerleading. Unlike most children, however, Maddie swallows more than 238 pills a week to treat her cystic fibrosis, fighting bacteria infections that can take months to go away and undergoing breathing treatments at least twice a day to loosen the buildup of mucus in her lungs.

“It is kinda not fun,” Maddie said, describing her various medications and therapeutic treatments.

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Maddie’s parents, Ashley Loper and Jordy Luke, of Meehan, learned that Maddie had cystic fibrosis just two weeks after her birth, plunging into a world of breathing treatments, medicine and appointments with doctors.

“It was so overwhelming,” Loper said. “All of that is thrown at you at once. Your 2-week-old baby is not going to just be drinking breast milk they’re also going to have to take pills.”

“I knew nothing about cystic fibrosis before Maddie was born,” said Maddie’s father, Jordy Luke. “The first time I heard about it I had to Google it.”

This lack of awareness drove Maddie’s family to start organizing fun runs, 5-kilometer races and more to raise money for a cure for cystic fibrosis.

“No one’s going to help support a cure if nobody knows what it is,” Luke said. “We have to let people know.”

This year’s 5K run/walk, on Dec. 10 at Bonita Lakes, will benefit the Cystic Fibrosis Foundation, which helps fund research and therapy for children and adults living with the disease.

The foundation defines the cystic fibrosis as a “progressive, genetic disease that causes… a thick buildup of mucus in the lungs, pancreas and other organs.” Common side effects include frequent lung infections, persistent coughing, male infertility and eventual respiratory failure.

Cystic fibrosis does not have a cure and the median predicted survival age is 40, an improvement from the 1950s when most children with cystic fibrosis did not live to attend elementary school, according to the foundation.

Because of her disease, Maddie received a trip to Disney World from the Make-A-Wish Mississippi chapter, coming back just before Thanksgiving. Between Disney World, Universal Studios and Seaworld Maddie discovered a new passion – roller coasters.

“I’m a bit of a chicken when it comes to roller coasters,” Luke said. “But I couldn’t let her ride one and me chicken out.”

“I learned that my child is a roller coaster junkie,” said Loper, laughing as she described Maddie standing on the tips of her toes to try and reach the height limits. “She wanted to ride the roller coasters over and over.”

Maddie’s type of cystic fibrosis affects her lungs and digestive system. Because of this, she doesn’t digest proteins and fats and has to take enzymes to improve digestion.

Most people with cystic fibrosis have poor growth and weight gain, losing even more weight if they get an infection. This means that Maddie’s after-school meal – chicken nuggets and a milkshake from Chik-Fil-A – aren’t just a treat but a necessary part of her high-calorie diet.

In the years Dana Peavy, Maddie’s grandmother, has helped coordinate the fundraiser, they’ve raised more than $100,000 for the foundation. Their biggest year, 2014, brought in $41,000.

“Being as small (of a group) as we are we do a pretty good job,” said Peavy, estimating that around 100-150 people participated in past years. “We enjoy doing it.”

Peavy said they try to change the fundraiser every year, from a Trick-or-Treat event in Decatur to a Hillbilly run at Lazy Acres in Chunky.

“We do the walks because then we can get a cure for cystic fibrosis,” Maddie said in a sing-song voice. “I like walking with my friends.”

Though at least two other children in the area have cystic fibrosis, the families don’t meet. In fact, medical professionals discourage patients with cystic fibrosis from interacting with each other because of the bacteria in their lungs.

Two children with cystic fibrosis attend Clarkdale elementary, Maddie and another child. The school must maintain at least six feet between the two children at all times. Additionally, Maddie receives some other help from the school that Loper greatly appreciates.

Still, the most challenging aspect of Maddie’s disease for Loper are Maddie’s own questions and realization that she isn’t like other children.

“She’ll say, ‘Why do I have to do this? When will we find a cure for cystic fibrosis?,'” Loper recalled. “And I don’t mind it because I will do whatever I have to do (for her). I don’t mind anything as long as she is getting what she needs. I just hate it for her.”

“She handles it well,” Luke said. “But it’s her way of life. Whether she wants it or not her life revolves around it.”

Over the summer, Maddie had an infection. She had to take antibiotics through an IV. Because of this, she couldn’t swim or get hot and sweaty, limiting her activities outside.

“She loves to play outside,” Loper said. “And she had to sit there and watch kids do what she can’t do.”

The stroller-friendly, non-timed 2016 Meridian Great Strides Walk/Run is scheduled on Saturday, Dec. 10 at Bonita Lakes. Registration starts at 9:30, with the 5K, holiday-themed event starting at 10 a.m. Complimentary refreshments will be served and Santa will be visiting from 9:30 a.m. until 11 a.m.

Registration costs $25 and the first 150 participants who pre-register will receive a t-shirt. T-shirts on the day of the event will be limited. Those interested in registering for the event can do so at https://meridiancf5k.passioncff.org/.

“All the money that we make goes to them,” Loper said. “(The foundation is) making it possible for our children to have a longer life expectancy and have a brighter future – not having to be sick all the time or coughing all the time and they can just enjoy life like everyone else.”