5 year old girl with ESRD lights up her parents' lives

5-year-old struggles with crippling disease and still lights up her family's lives

By Betty Kossick
Correspondent

Published: Saturday, November 29, 2008 at 6:30 a.m.
Last Modified: Saturday, November 29, 2008 at 5:31 a.m.

Kinsey Lynn Bogart is only 5 years old, with a delightful personality, and already mimics a mentor - Dora the Explorer, a cartoon character of Noggin and Nick Jr. cartoons. Kinsey looks amazingly like Dora and has even learned some Spanish words from watching her look-alike.

Though Dora is amusing and fun to watch, Kinsey is a youngster who is traipsing through uncharted territory with a child-size "K" walker and not-any-fun-at-all daily medical care.

Kinsey was born as a normal child to Holly and Damon Bogart. Holly is a nurse and Damon is the Marion County Engineering Inspector. But somewhere between Kinsey's 6th and 7th month, an enigmatic disease - atypical hemolytic uremic syndrome - took over her life and that of her parents.

"Typically the disease comes from ingesting e-coli from 'anywhere.' Up to this point, the tests don't show that her disease is inherited," said Holly.

The doctors have been detectives from the beginning for the disease that knows no cure.

"Her prognosis is not good," Holly said.

Kinsey's kidneys have quit working and she's on 10 hours of dialysis while she's sleeping.

Every night.

That means Kinsey's life depends on the tubing and the machine she is connected to. She must wear a port all the time, a port connected to her right side that she calls "My Buddy."

Holly said Kinsey is not a candidate for a kidney transplant because her condition has clotted all her veins.

Mercifully, her body has built new veins throughout her chest to sustain her life.

How did Kinsey's parents handle Kinsey's initial diagnosis?

"It was hard," said Holly. "But my faith is big. Damon's wasn't at the time, but since then he's given it over to God. He now has a realization that as a dad he can't fix it. Nobody can. It's a God-in-control thing."

Holly is taken with the fact that Kinsey touches so many people.

"Recently, we were in Target shopping and I was pushing her along and a stranger - a little old lady - came up to us and said, 'Your little girl is precious. She's filled with the spirit.' That's true, because Kinsey is a happy little girl despite all that she's been through," said Holly.

There are many sleepless nights for Kinsey, Holly and Damon.

"Sometimes the tubing gets kinked when she moves around in her bed, the machine beeps and we're all up," said Holly.

Unfortunately, the disease causes compromises in Kinsey's body and other problems develop.

An aversion to food causes her to eat very little.

"Her diet consists of French fries and other salty and crunchy foods," said Holly. "Because of this, she takes Nepro, a nutrient supplement."

Kinsey wears out fast - and caution must be taken for her not to get cut, bruised or fall because she takes the medication Coumidin.

"She'll never be able to play contact sports," Holly said. "As an end-stage renal disease patient, Kinsey can't have any shots, due to calcifilaxis, calcium deposits in her soft tissues."

In other words, Kinsey is multi-diseased, Holly said.

In addition to all that, little Kinsey has already had 19 intubations with anesthesia.

"Basically, we're in limbo, we take it one day at a time because we never know what's going to happen next," said Holly.

"Kinsey has been a blessing, but she has tried my faith and sanity," said Damon. "I blamed myself for the longest time because my wife has kids from a previous marriage and they are healthy. My Mom taught handicapped children for more than 25 years, and I never dreamed that I'd be around a daughter with an illness. But I always think of the times when Kinsey acts silly or makes us laugh if I start getting stressed."

Holly said Kinsey enjoys the attention that her brothers Bryce and Christopher Maxwell from a former marriage give her. "They come often to see her."

Though all this is exhausting, the fact that Holly is a school nurse at Ward-Highlands (where Kinsey attends the Exceptional Student Education program) helps avoid emergency room visits because she knows what to do.

"I usually take her right to her pediatrician or to Shands Hospital in Gainesville," she said. "All of her evaluations and hospital stays are done in Gainesville. Currently Kinsey is being tested for another kind of genetic disorder.

"I get very tired sometimes, but God always sustains. Supposedly, dialysis doesn't last forever, peritonial dialysis especially. She has no vascular access for hemo dialysis."

Holly said that dialysis patients receive Medicare assistance for supplies only.

The Bogart's do have medical insurance, but the expenses far outweigh their income and they face overwhelming financial stress.

"My previous nursing job was at the Ocala Heart Institute, but I took a significantly lesser paying position which gives me the summers off. It's hard to find a caretaker when she's out of school," said Holly.

"The financial need is why our house is up for sale. And when we sell, we'll move to north Ocala to be closer to Gainesville. We do have a trust fund for Kinsey called the Kinsey Lynn Bogart Trust Fund at Ocala National Bank."

A golf tournament was held recently to benefit the little girl with the mega-watt smile.

But Kinsey isn't aware of all the work and worry, especially at the moment. As her mom tells her story, Kinsey zips across the room on her tiny walker to play Playhouse Disney. "Yes," Holly said, smiling, "Kinsey is a computer geek."

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