Families, community rally around girls with rare diseaseWritten by Vicki L. Kroll | | email@example.com
Kaylee Halko’s enthusiasm to meet the winged wonders at the Butterfly House was obvious when she arrived.
But the 9-year-old was polite; she greeted Carly Kudzia and showed the 2-year-old some moths eating a banana.
Then Kaylee stood still with outstretched arms and said, “I’m standing right here: Land on me!”
With butterflies and moths flitting around, she cracked, “Do they not like small people or something? Seriously?”
While Carly happily trotted around, Kaylee’s eagerness — and impatience — grew.
“I don’t bite,” she told the flying insects. Not exactly the butterfly whisperer.
With the help of Carly’s brother, Garrett, Kaylee soon had two paper kite butterflies perched on her hands.
Meanwhile, Carly was watching koi in a pond. Then the outgoing girl climbed up on a bench and sat next to a young boy, who didn’t know what to think.
“She’s such a flirt,” joked Heather Kudzia, Carly’s mom.
Kaylee and Carly have a lot in common with the butterflies. They’re beautiful and delicate. They’re colorful characters who make people smile. And right now, they have a short life expectancy.
The two girls are among 96 children in the world who have progeria, a rapid-aging disease. Kaylee lives in Monclova Township, just minutes away from Carly in Whitehouse.
“It certainly is a coincidence to have them so close considering there are only 22 for the entire U.S. population,” said Audrey Gordon, president and executive director of the Progeria Research Foundation, a nonprofit organization dedicated to discovering treatments and a cure for the fatal genetic condition.
“The fact that this disease is so rare in the world and we have two girls in the area, maybe they’re here to help and support each other,” said Duke Wheeler, co-owner of Wheeler Farms and the Butterfly House in Whitehouse.
“It helps because they’re close. Kaylee loves the fact that Carly lives nearby,” said Marla Halko, Kaylee’s mom.
“[Progeria] is a hard disease, and I’m glad that the community supports Kaylee and accepts her differences,” she said. “It’s just great that people want to get involved and try to help us fight this disease.”
Wheeler is one of those offering assistance. He donated the Butterfly House’s Sept. 8 proceeds, totaling $1,000, to the Progeria Research Foundation.
“It’s kind of tough to raise money for a rare disease nobody really knows about,” said Ryan Kudzia, Carly’s dad.
Both families are holding fundraisers to help pay for a new drug trial that will be conducted by the Progeria Research Foundation.
Studies have shown rapamycin may be a possible treatment. The drug decreased the disease-causing protein progerin by 50 percent in mice, according to a 2011 study published in Science Translational Medicine.
“We’re really excited about that possibility, of the drugs transferring over from helping cells in animal models to the children,” Gordon said. “We’re excited for the children, and we’re excited for the families — there’s really true hope now.”
She estimated the cost for the new study at $5 million.
“When Carly was diagnosed (in April 2011), the second drug trial was well under way; it was too late for her to participate,” Heather said. “The third drug trial we think is being finalized right now.”
Kaylee is participating in the current trial.
“She’s healthy. We haven’t had any issues,” Marla said. “The Progeria Research Foundation is actually working on prolonging the second trial so the children don’t have to go off the medication while they’re trying to work with the Food and Drug Administration [on the new trial].”
The waiting is hard.
“What are we doing? We’re just sitting around getting old! I can’t stand it! Get me the medicine! Everyone is feeling that, I’m sure,” Heather said.
In the meantime, Kaylee and Carly are staying busy.
“Kaylee’s taking jazz and tap dancing now,” Marla said. “She loves tap. She’ll come home from school and put the shoes on and tap around just because she loves the sound.”
“She’s also taking karate and is an orange belt,” said Tim Halko, her dad.
“Carly’s into ‘Curious George’ videos. She’s got her own pink iPod; she’s really into that and videos and pictures,” Ryan said. “She’s just an all-around happy little girl.”
“We’re lucky that people recognize Kaylee. They know about progeria. They know it’s something not to be scared of. They wave; they’re friendly,” Heather said. “We don’t want to shy away from the fact that Carly has progeria; we want to tell the whole world, see if they can help. And when you recognize Carly, you don’t wonder, but instead you wave or smile.”
Carly’s Party for the Cure
A fundraiser, Carly’s Party for the Cure, is set for 7:30 p.m. Sept. 28 at the Pinnacle, 1772 Indian Wood Circle, in Maumee.
This is the second year for the fundraiser, which will feature about 50 raffle and auction baskets, appetizers, a cash bar and music by Alter Ego.
Tickets for the 21-and-older event are $25 and are available online at teamCarlyQ.com/events.
The 2011 party raised $26,000 for the Progeria Research Foundation.
“We had over 400 people last year at the event, so we’re hoping to at least have 400 this year at the Pinnacle and maybe more,” Ryan said.
“It’s kind of overwhelming to feel all of that love coming toward our family and toward Carly,” Heather said. “I definitely feel lifted up and that we are not alone.”
Kaylee’s Course, the seventh annual race for progeria research, will take place Oct. 13 at Monclova Primary School, 8035 Monclova Road.
Registration begins at 9 a.m. The race starts at 10 a.m. Cost is $12 before Oct. 1 and $15 after for the 5K run/2-mile walk. Children 10 and younger are free.
There also will be a silent auction and raffle. Proceeds will go to the Progeria Research Foundation.
See details at sweetkaylee.com and on Facebook at groups.to/sweetkaylee.
Tim and Marla are looking for silent auction items and sponsorships. Contact them at firstname.lastname@example.org or (419) 878-3231.
“The event has gotten bigger than I ever thought it would,” Marla said.
“Last year, the school had a hard time trying to contain it,” Tim said, adding that nearly $60,000 was raised at the event. “It means a lot to us that the community has supported us and Kaylee — and Carly.”