Fundraiser aids girl, 9, with rare degenerative disease

2013-04-29T20:17:00Z 2013-04-30T09:59:04Z Fundraiser aids girl, 9, with rare degenerative diseaseLU ANN FRANKLIN Times Correspondent nwitimes.com
April 29, 2013 8:17 pm  • 

SCHERERVILLE | Kailey Florkiewicz enjoys donning her leotard and taking dance classes at Patti’s All-American in Dyer with her younger sister, Kenzie, 8.

However, the 9-year old third-grader at Peiffer Elementary School was diagnosed on Feb. 26 with a rare, degenerative disease, Niemann-Pick (Type C) Disease, sometimes called "pediatric Alzheimer’s."

Seizures, loss of muscle control, deterioration of speech and eventual dementia are among the symptoms of this disease with no cure and few treatments.

It’s a devastating diagnosis for the Florkiewicz family, but one that Roger Florkiewicz said fits all the symptoms that Kailey has displayed since age 6 1/2.

“Kailey became clumsy and had small balance issues. She compensated with a run/skip when she was running around the house,” he said.

When Kailey entered first grade, her teacher noticed that her reading skills and memorization weren’t up to what she had exhibited in preschool.

Tutoring, summer reading programs and one-to-one work at home only helped for a time, and Kailey’s clumsiness continued. Small pauses called “absence seizures” also became noticeable.

Numerous trips to learning disability experts, pediatric neurologists and other medical specialists finally resulted in a DNA test and the diagnosis. The genetic disorder is passed on from the parents who carry recessive genes for Niemann-Pick (Type C) Disease, Roger Florkiewicz said, and life expectancy is limited.

While the family is appealing their insurance company's refusal to approve a medication for Kailey, her symptoms are worsening, her father said. Kailey is experiencing violent seizures and major motor function declines.

In the meantime, Roger and Krissy Florkiewicz are focusing on the Walk/Run for Kailey fundraiser at 1 p.m. Sunday at Clark Middle School track, 8915 W. 93rd Ave. in St. John. Funds will go to the National Niemann-Pick Disease Foundation for researching the disease that affects 200 children nationwide and about 500 worldwide.

“We’re doing all right. We don’t need the money,” said Roger Florkiewicz. “Every dime that’s raised will go to the Niemann Pick Disease Foundation Inc. to research treatment and a cure.”

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