FORT WAYNE, Ind. (Indiana’s NewsCenter) – A Fort Wayne girl with a rare degenerative muscle disease takes a flight that could surprise her and change her life.
Taylor Kilgore is like any other normal 11-year-old girl, playing games, doing arts and crafts, and getting on big sister, Megan’s, nerves.
“She can be very playful and very annoying,” Megan Kilgore said.
It is hard to tell when looking at her, but the reality is Taylor is suffering from a chronic, degenerative disease called Mitochondrial Myopathy and doctors aren't exactly sure what it is.
“Mitochondrial Myopathy is basically a neuro-degenerative disorder. It can affect all your systems,” Angela Harter, Taylor’s mother, said.
Mitochondria are the parts of a cell that produce power. Harter says Taylor’s mitochondria are only producing about half of what they should. Therefore, many of her organ systems are failing. Taylor is having complications with five of her organ systems. She can no longer process food and must carry around a bag to get fluids and nourishment. Taylor is also home-bound because her immune system does not protect her from germs very well.
Taylor and her family spend most of their time at doctor's appointments. Harter says they work with doctors in seven different states. With all that, traveling can get expensive, so Harter found Lifeline Pilots online. Lifeline Pilots sponsors "Angel Flights," where patients and their families fly for free to anywhere around the country.
“We're all over the place, so to have that fixed is huge,” Harter said. “To know that I can get her there is just a burden that has been lifted and that’s a big deal right now.”
The family’s next big trip is to Florida to visit family for the Holidays. Then, they will take an Angel Flight to Atlanta where a panel of expert doctors will conduct tests and share their results. Harter says whenever they travel they turn it into a “mini trip” to help enjoy being away from home.
“We are going to try and do everything we can to prolong the meaningful life and give her the best time that she can have. That’s our goal,” Harter said.
With this particular trip, there could be an element of surprise. Harter says celebrities often pilot Angel Flights.
“Story is, [John] Travolta, who is in the area that we are visiting in Florida, that he donates a lot of his planes to this. Sometimes he shows up and he actually flies the people himself,” Harter said.
Taylor says she’s very excited to go and that she, “can’t wait,” although she isn’t exactly sure who John Travolta is.
“I have seen him on movies, but I don't know what he looks like,” Taylor said
It turned out, that their pilot wasn't John Travolta, but instead a man who's own daughter is suffering from disease, and understands what Taylor is going through. James Vermillion says he began piloting for Angel Flights several months ago, and did it in honor of his daughter and his best friend’s daughter who died of leukemia.
“There’s a lot more to life that you need to give as much as you can give, and do everything you can while you can,” Vermillion said.
Vermillion says it was a pleasure meeting Taylor and her family. “Taylor has defied all the odd. She has done very well, and has such a wonderful spirit and attitude.”
But, despite not meeting Mr. Travolta, the family says they had fun anyway. Taylor and her mom say their favorite part of the trip was the flight. “I really liked seeing the clouds and stuff,” Taylor said.
“The flight home I got to sit in the cockpit, so to me this was completely intriguing,” Harter said.
Sister, Megan, said she enjoyed Florida more than Atlanta. “[We got to] shop, go to the beach, and spend time with family.”
Harter says she’s just happy she got some peace of mind from the meeting with doctors and from Angel Flights.
“[I’m] incredibly thankful. They have been over the top polite and generous,” Harter said. “Words can't tell you how nice it is that somebody is so quick to say, 'Yes, we'll be there. We'll get you there.’”
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