By Whitney L. Allen
July 20, 2006 10:26 am
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PLAINFIELD — Today she appears to be a normal, yet slender, 8-year-old girl — running around, doing schoolwork, swimming with her friends, but her mother said that could change any moment.
“Kids with this disease will be fine one day, two days later they are gone,” said Jackie Parrish, the mother of Kyliegh Parrish.
The Parrish family first brought Kyliegh in when she was 11-months-old through the foster care system.
“She was very sick, but we didn’t think we had the financial means to adopt her,” Jackie said. “Things fell together and we found someone who would do it for us. I thought that it was just meant to be.”
After five surgeries Jackie said Kyliegh seemed to be doing better until they got some shocking news at Riley Hospital.
“We thought she was getting over being ill, and then it came as a surprise when we got some bad test results,” she said. “They told us we needed to go see a specialist.”
They found out over a year ago that Kyliegh is fighting mitochondrial disease, a rare hereditary disorder that only effects one in every 4,000 children.
“The best way I’ve heard it described is it’s like a house that is losing it’s power supply,” Jackie said. “She only has a limited amount of energy.”
Because the disease is so rare, very little research has been done for the cause, and most children with the disease do not make it through adolescence. All of Kyliegh’s drugs are experimental, and her family often has to travel to Atlanta for her testing. And each test result takes up to 24 months to come back.
“You just keep praying and making the most out of each day,” Jackie said. “You keep hoping maybe they’re wrong, maybe she’ll get through it.”
When family friends found out none of these costs were covered by insurance, they teamed up to form Kyliegh’s Krew.
“I met the Parrishes nine years ago. I needed someone to babysit my kids in a pinch and (Jackie) helped me out,” said Ann Marie Scharlau, one of the leaders for Kyliegh’s Krew. “Now we’ve become family. They would do anything for us and we would do anything for them.”
The “Krew” has held several events in the past, and last year one of their main events was Kyliegh’s Karnival.
“Last year it started and we didn’t have any clue what we were doing,” Scharlau said. “It’s amazing how a community will rally around their own and take care of their own. We’ve had a lot of businesses come in and ask how they can help or what they can donate. For the Karnival last year Pools of Fun gave us their property and JDH gave us their generators. It’s kind of neat to just sit back and see how people have just stepped up.”
At last year’s event Scharlau said they were hoping to get at least 100 people in throughout the day, and more than 600 showed up.
“I’m not from Plainfield, but my husband is,” Scharlau said. “It’s neat to see the whole community — even people that don’t know the family — come help out. It really renews your faith in mankind.”
After last year’s event the Krew was determined to hold the event annually to raise money for mito research and Kyliegh’s treatment. They started right away to try to secure Hummel Park for the event.
“They tried and tried for Hummel, but they just wouldn’t have it,” Jackie said. “I’m not sure what happened there, but I’m sure it’s for a reason.”
After rethinking their setting, Kyliegh’s Krew attended the July 10 Plainfield Town Council meeting to ask to hold the event at Franklin Park. The Town Council granted their request, and now final plans are underway.
The event is slated for 2 to 9:30 p.m. Aug. 19 in Franklin Park, with parking available down the trail at the Plainfield Aquatic and Recreation Center and the park. The event will host carnival games, bands, and food, and admission will be free of charge.
“Everything that Kyliegh’s Krew does is centered around community and kids especially,” Scharlau said. “Most of the activities will be planned with kids in mind. We will have around 25 games and inflatables, and five or six bands playing.”
The proceeds will again go to help fund ‘mito’ research and Kyliegh’s treatment.
The Parrish family has helped with Sheltering Wings, little league teams, the PTO, and other organizations around Plainfield and Hendricks County for years has found it hard to be on the other side of things.
“For us, this is the flip side,” Jackie said. “You never expect to be on this side of things. What goes around comes around, and it’s great to have the community help us out.”
Although Jackie said Kyliegh is aware of her disease, sometimes it is still hard for her daughter to understand exactly what is going on.
“The other day Kyliegh asked me, ‘Mom do we have enough money?’ I told her of course we did and asked what she wanted,” Jackie said as tears formed in the corners of her eyes. “I thought she wanted a Coke or candy or something — we feed her whatever we can since she is so small. She said, ‘Then why can’t you just give it to the doctor so he can give me medicine to get better?’ She just doesn’t understand they are still trying to find that medicine.”
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Photos
Kyliegh Parrish takes a break from swimming with her friends.