CHICKASHA —
Several months ago you may have found five-year-old Krystan McConnell twirling around in circles with her favorite pink and purple tutu on. Or you could have spotted her breaking boards in half at one of her favorite karate classes.
Life has certainly changed for this once active little girl. Krystan was tragically diagnosed with a life threatening disease called Chiari and some days she struggles to gain enough strength to get out of bed.
Krystan's doctors say she is in dire need of a very expensive surgery costing around $170,000. The surgery would take place in New York because Oklahoma does not have the necessary operation available. The problem is, the McConnell's health insurance refused to pay for the surgery.
Krystan's mother Lana, a nursing student at Canadian Valley Technology Center explained her frustration with her insurance provider, and their lack of help during an already stressful time.
"Indian Health is our insurance provider. It is through Chickasaw Nation. They are saying they won't pay because it's out of state. It's too far," Lana said.
Indian Health has made some contributions.
"We found out last week that they are going to donate $40,000, but that's not actually for our insurance but it's a donation from Chickasaw Nation," Lana explained. "That was after months of fighting with them and calling the governor, and that's actually how we ended up getting it."
There was some obvious hypocrisy from the insurance company, according to Lana.
"They posted a big thing in the paper with all that they do for the children in the area and I said, 'Listen, this is a five-year-old girl and she's a Chickasaw citizen. This is what you're suppose to do. You're supposed to help," Lana said.
Robin Williams, a representative from the Oklahoma City Indian Health office said the company does not speak on personal claims.
Even after the New York hospital called the McConnell's insurance provider and tried to work out a deal, they still denied coverage.
Krystan is a special circumstance, her mother explained. She also has something neurologically wrong with her other than Chiari. The doctors do not know what it is because they cannot isolate the symptoms to narrow it down and diagnosis it.
"My husband had to quit his job to come work at home because she was too sick and going in and out of the hospital all the time," Lana said. "He had to get another job here, making one-third of what he normally makes."
Normally the cerebellum, which is the part of the brain that controls balance, sits in an intended space at the lower back of the skull. When part of the cerebellum is located below the foramen magnum, it is called Chiari malformation. Symptoms of a Chiari malformation can include muscle weakness, numbness, vision problems, hearing loss, and headaches, all of which Krystan experiences on a daily basis.
"She has headaches all the time. She has neckaches and her voice has even changed. She has tummy aches everyday. Her legs and arms hurt. Sometimes her legs hurt so bad she can't even walk," Lana said.
Despite the overwhelming symptoms and exhaustion, Krystan manages to maintain her up-beat personality.
"She loves anything girly," Lana said. "She is very, very, very girly. She thinks she's a little princess, and that's okay. Her favorite colors are purple and pink."
Before being diagnosed, Krystan was known as quite the athlete.
"She loves cheer leading, dance and karate, which she hasn't been able to participate in right now because she has been so sick," Lana said.
Krystan is too young to understand most it, according to Lana, but she knows she hurts. Krystan knows she will have to undergo surgery to deflate some of her symptoms, but she is excited to thank her future doctors for any relief she may get.
"This morning she was singing, 'Thank you doctor for making me better so I don't hurt no more," Lana said.
The McConnells have to pay the money for the surgery up-front, including four plane tickets from Oklahoma to New York, as well as accommodations and food.
The McConnells hope to leave on Sept. 22. There is a bank account you can donate to at the First National Bank in Chickasha under the name "Krystan McConnell Emergency Medical Fund."
Pat Brooks, chairman of the First National Bank in Chickasha wishes Krystan and her family the best.
"All the employees of First National Bank wish Krystan the best and will keep her in our prayers. We encourage all area citizens to help this young lady have an opportunity for a bright future," Brooks said.
You can also donate through the designated PayPal account under HelpKrystanConquerChiari@gmail.com and join the Facebook group 'Help Krystan Conquer Chiari' for updates, personal photos and more.
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Krystan has had to endure multiple tests leading to her diagnoses. Photo courtesy of Lana McConnell
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September 14, 2012
Local child keeps spirit despite battle with debilitating disease
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