Kaylee's Course helps fight rare disease - 13abc.com Toledo (OH) News, Weather and Sports

Kaylee Halko is a young Monclova girl battling a rare disease. She's one of only 22 children in the United States with progeria, which is commonly referred to as the rapid aging disease.

This weekend Kaylee, her parents and three brothers are hosting a run and walk to raise money for progeria research. Kaylee has a lot of great energy. She is enthusiastic, bright and very witty and she hopes all of us can be part of finding a cure for this rare disease.

Progeria hasn't slowed Kaylee down. We quickly learned that she's a very active nine year old, but her dad Tim says she didn't come out of her shell right away,"She used to be shy, but not anymore!'

We started our visit with her guinea pig, "He doesn't miss a meal does he? No!"

Then she showed off some karate moves on her parents and from there she tried to teach me the art of cup stacking, "Take one up, flip it. That's easy for you, but not for me!"

After that it was on to a card game with her parents, "This is the greatest day, I just beat dad!"

Kaylee was diagnosed with progeria just before her first birthday and the annual walk in her honor is helping researchers find answers, "Why is this walk so important? Because it's going to help raise money for medicine so I can get better."

Tim says this event is critical because of the small number of progeria cases ,"Every dollar raised goes right to research and because there are only 22 cases in America it takes a lot of events like this to fund the research and the drugs."

That research is paying off. Kaylee was part of a drug trial that's showing promising results. Children with progeria often suffer from strokes and heart attacks. Her mom Marla says the drug definitely helped Kaylee, "To see on paper that her arteries are looking better is the best news ever because that's what they suffer from, heart attacks and strokes, so it's great to know this is working and it can prolong her life. We just have to keep going from the next step forward to the next step forward."

Kaylee hopes to be part of another drug trial that's expected to start soon, "I know they are working on another drug that is supposed to make me taller.That's what my mom says, hopefully it's true. I want to be four feet tall, wait I want to be 5 feet, 6 feet, 7 feet tall!"

Kaylee's course is this Saturday. It starts at 10 am at Monclova elementary school. Last year there were more than 1,200 walkers and runners and they raised about $60,000.  All the money goes to the Progeria Research Foundation. 13 ABC is a proud sponsor of the event.

As you may know there are 2 other girls in our region with progeria. Carly Kudzia lives less than 10 miles from the Halko family. The third girl lives in the Flat Rock, Michigan area.