Kylie McPeak is one happy girl.
Just last week, she met Cinderella at Walt Disney World in Orlando and she even got an autograph from the glass-slipper princess.
“And I got to go on a scary ride,” Kylie said, her eyes lighting up and letting out little giggle as she told the story of the haunted hotel ride. “It was really scary.”
In her bedroom at her family’s Spanish Springs home, Kylie proudly shows off her collection of Disney princesses and her prized E.T. stuffed toy that sits on her bed and helps her sleep at night. Then, of course, she informs her mother that Tigger from the “Winnie the Pooh” series is her boyfriend.
Kylie is 4 years old, the oldest of three sisters, loves the color pink and has an undiagnosed illness that causes her to have frequent seizures and constant shakes all over her body.
And her mother, Gina Larsen, doesn’t know what else to do.
“It seems like only seven or eight months ago, she was fine,” Larsen said, fixing her daughter’s hair and smoothing it around her slightly shaking face. “As her mother, I never thought she would get sick, I never thought she would ever get anything.”
Only eight months ago, Kylie was fine, maturing quite fast for a child her age. Larsen said Kylie had learned to walk, talk, spell her own name and count all at a very early age.
“I had parents telling me all the time, ‘Man, I wish my child was like yours,’ ” Larsen said.
Things are quite the opposite now.
Back in November 2007, Kylie was diagnosed with Type I diabetes, which was “awful to go through,” Larsen said. Then in March of this year, Kylie developed a strange voice tremor, eventually leading to her series of seizures for the months that followed.
Larsen panicked and took Kylie into the emergency room dozens of times, often being told that “children simply sometimes have seizures.”
But Larsen knew something was wrong.
By May and after several series of seizure medications, Kylie’s twitching became constant and had spread across her whole face. Larsen was referred to Stanford Hospital in California for further medical care.
“We went back and forth so many times,” Larsen said with a sigh, explaining that after numerous surgeries, including the placement of plasma transfer tubes in her daughter’s chest and Botox injections to calm the shaking, there is still no diagnosis.
“As of right now, it’s an undiagnosed, neuro-disease of unknown origin,” she said.
Which, according to several of Kylie’s pediatricians, due to the rapid progression of Kylie’s condition between May and now, she may have only a matter of seven months to a year to live if it is neuro-degenerative as suspected.
“Ever since June when her condition really worsened, Kylie went from 33 pounds to 27 pounds, placing her in the third percentile for her age group,” Larsen said. “We’re going back to Stanford in either January or February to see if it is genetic. It’s just so hard to see her without energy.”
During this time, because of the extensive traveling and growing medical bills that now exceed $20,000, Larsen and her family at one point had to temporarily move into a weekly motel to help make ends meet.
“We don’t like asking for help,” Larsen said, adding that her family has since moved back into an apartment in Spanish Springs and that Christmas is tight this year. “We qualify for prescription supplements, but we don’t qualify for Medicaid and we’re fast approaching the cap on her health insurance.”
Last week’s trip to Disney World, made possible through the Make-A-Wish foundation, provided some much needed help, Larsen said, adding that it did Kylie some good to get out and play.
“She’s always been very sweet,” Larsen said. “She’s always been spoiled, but she’s very loving.”
Nearby, Kylie takes a nap on the couch. Her illness causes her to have irregular sleep patterns.
“I mean, what am I supposed to do?” Larsen said, looking at Kylie, her eyes tearing up a bit. “Am I supposed to plan a funeral or for her to go to kindergarten?”
http://www.undiagnosedillness.org