Fillin’ the boot
4-year-old impacts local fire department
When Katy Sue Haynie of Bryant found out she might be going to the local park to take photos for this story, she could barely contain her excitement. She immediately began to confirm the trip to the park with her mom, Lindsey Haynie, and couldn’t focus on anything else. Anyone who looked at Katy would most likely think she was a typical 4-year-old.
“She gets treated like any other sassy 4-year-old,” Lindsey said. “If you just ran up to her in the street, you wouldn’t know anything was wrong with her, and I think that is what surprises a lot of people.”
Katy was diagnosed with Charcot-Marie-Tooth disease, a form of muscular dystrophy, on Oct. 25, 2017. CMT is a hereditary disorder that damages the nerves in the arms and legs. Lindsey said that right now, doctors are in the process of figuring out what kind of neuropathy Katy has because, she said, there are two types.
“So they are running more DNA tests to find out exactly which one it is,” Lindsey said. “At 6 weeks old, Katy was diagnosed with torticollis, which is a shortness of the muscles of the neck. She started physical therapy then, and she just never met any of her milestones.
“Her physical therapist pushed me to do some testing. She was diagnosed with everything you could possibly think of before they did genetic testing and discovered it was muscular dystrophy.”
Lindsey said Katy does physical therapy three days a week and takes prescribed pain medicine as needed. Lindsey said her daughter stays in pain “pretty much all the time.”
“She just knows that her legs hurt …,” Lindsey said. “A lot of her pain starts midafternoon and continues into the night. Most of our nights are not an eight-hour sleep pattern.
“She will get two or three hours here and two hours there, simply because she is hurting. We have to adjust her medicine and use ice packs.”
In March, the Benton Fire Department raised $13,015.22 during its Fill the Boot campaign for the Muscular Dystrophy Association and presented the check to Katy and her mom.
“We did Fill the Boot with Bryant in December, and I want to say they raised $10,000 or $12,000; then we did Fill the Boot with Benton in March, and they raised $13,000,” Lindsey said. “I think part of the reason they were able to raise so much is because Katy was there to motivate them.
“We had spent several hours with both departments prior to Fill the Boot, going and meeting with firefighters and letting them get to know Katy.”
Stuart Duke, president of the firefighters union and a member of the Benton Fire Department, said that by allowing Katy and her mom to tell her story, the firefighters are able to put a personal face to MDA.
“Katy is a special little girl,” he said. “Many of us have kids who are full of joy and love to play, and Katy is a little girl who just wants to live life. … As firemen and EMTs, we understand the medical side of [her condition]. We know what her life could look like in an instant, and for it to happen to such a free-spirited little girl, it just crushes you.”
The Fire Department raised the money in just four hours.
“It means a lot, especially in today’s time,” Duke said. “You wonder if the giving spirit is still in everybody. From the fireman side, with guys willing to give their free time and come out and collect, the citizens of Benton stepped up in such a great way and gave of their money so willingly and freely. … It meant a lot that the good in people is still there.”
Britany Hargett, development director for the Muscular Dystrophy Association in Arkansas, said the $13,000 was the most money the department had raised in more than five years.
“I think, for next year, they plan to make it even bigger by adding another intersection and another day,” Hargett said. “They did such a good job. They raised that money in only four hours.”
She said every dollar raised through fundraisers like the Fill the Boot campaign funds programs and services, such as the loaner closet. If a family needs a walker, scooter or wheelchair, “we will do our best to get it for them,” Hargett said.
“MDA will service it until the patient no longer needs it and gives it back,” she said. “We also have self-help groups and online seminars. The money also helps fund research and really changes the game in terms of medication and treatment. … A certain percentage is allocated to all of those things, but it affects each family locally in the same way.
“Across the country, our patients are getting the exact level of treatment, regardless of income or size of the city they live in.”
Lindsey said her daughter may need a wheelchair at some point, but more than likely, it will happen when she is older. She said that typically, Katy gets tired on long walks, so her mom uses a stroller for a lot of things.
Lindsey said Katy’s disease tests them with new struggles almost daily.
“It is affecting Katy’s brother, [Noah], in ways I never thought it would because I have to devote a lot of time to her. … Every day is like a new day,” Lindsey said. “Some days, it doesn’t bother her. Other days, it completely wipes her out.”
Lindsey is a single mom and had to move back in with her mom after Katy was diagnosed with muscular dystrophy. Lindsey is currently finishing up her criminal justice degree and is interning three days a week with the Hot Springs County Juvenile Court.
“It is me when she has to go to the doctor, or me when the school calls when something is wrong or anything like that,” Lindsey said. “I couldn’t have made it this far without my mom’s help.”
Duke said he met Katy and her mom almost two years ago after they came to a union meeting and told their story.
“I can’t help but think positively,” Duke said of future fundraisers. “It only goes up from here. I am looking forward to it because we had such great participation.
“I can only imagine what it could be. I would love to exceed the previous year every year, and I think it is possible. I can’t help but think we can only grow this from here.”