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Employee organizing fund-raiser for drug trial to help daughter with fatal disease |
| By
Vicki L. Kroll |
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Sep 7, 2006 |
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Tim and Marla Halko were stunned when their daughter, Kaylee, was diagnosed in 2004 with progeria — a rare, fatal disease characterized by dramatic accelerated aging.
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| Kaylee and Tim Halko |
“The first two years, we didn’t do anything,” Tim said. “Progeria is 100 percent fatal. I told Marla we could just sit here and do nothing, or we can get involved and do as much as we can.
“If the day comes and something happens to Kaylee, I want to be able to look myself in the mirror and know I did everything I could.”
The UT accountant in the Accounting Department on the Health Science Campus and his wife are organizing a fund-raising event, Race for Progeria. The three-mile walk/run will take place Saturday, Sept. 30, at 10:30 a.m. at Monclova Primary School located at the corner of Monclova and Waterville roads. There also will be a silent auction.
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| Kaylee and her brother, Timmy, at Fifth Third Field |
All proceeds will go to the Progeria Research Foundation, a nonprofit organization dedicated to discovering treatments and a cure for the disease. Since it was established in 1999, the foundation has funded work that isolated the progeria gene. In July, the foundation launched a campaign to raise $2 million to fund a clinical drug trial for children with progeria.
“Everything that’s raised will go toward the drug trial — that’s where we need the money right now,” said Tim, a 1995 UT alumnus.
Kaylee turned 3 July 21 and threw out the first pitch at the Toledo Mud Hens’ game.
“She loved it. The crowd loved her. She was dancing on the field,” Tim said.
“She really is just a normal 3-year-old. The only difference is being she has three older brothers — she likes to play with dolls a little bit — but when we asked her what she wanted for her birthday, she asked for a baseball bat. We gave her a tee and a plastic bat and ball. Her favorite thing is to hit the baseball in the backyard. She loves to do everything the boys do right now.”
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| Kaylee and her brothers, from left, Timmy, Brendan and Jacob |
And she holds her own, even though she’s small. Kaylee is 3 feet and 1 inch tall and weighs 18 pounds.
It was when she stopped growing around 6 months old that Tim and Marla became concerned.
“At first, doctors thought we weren’t feeding her enough,” Tim recalled. “We told them we’ve got three kids and we’ve done everything the same with Kaylee as we did with the boys. We didn’t know why she weighed only 9 pounds.”
Visits to specialists followed. “Everywhere we went they released her with a clean bill of health,” Tim said.
When Kaylee turned 1 and still wasn’t gaining weight, doctors suggested the Halkos take her to the University of Michigan. “As soon as we walked in, the doctor knew right away what was wrong with her,” Tim said.
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| "Princess" Kaylee |
Difficulty diagnosing progeria isn’t surprising. There are just 12 known cases in the United States, according to the Progeria Research Foundation.
“When she was diagnosed, the doctors pretty much told us to enjoy her for the 13 years or so she’ll live. There’s really nothing you can do,” Tim said.
Kaylee does take a half aspirin three times a week. “Children with progeria die of heart disease, so this has been found to help,” Tim said.
The family also travels once a year to the National Institutes of Health in Bethesda, Md.
“The NIH is paid for because at the same time they’re doing research on Kaylee and children with progeria, they’re also learning a lot about heart disease and the normal aging process,” Tim said. “One doctor told me it takes a normal person 50, 60 years to develop heart disease; Kaylee’s will come on over the course of two years.”
Tim, Marla and Kaylee have handled things with the help of a built-in support system — Timmy, 8, Brendan, 6, and Jacob, 5.
“It’s only been six months since we told the boys exactly what was going on,” Tim said. “As soon as we explained to them what it was, they’ve been great. They help at all the fund-raisers.”
And the media attention has helped.
“We didn’t want to be on the news all the time, but we want to get the word out about progeria,” Tim said. “Six months ago before we were on the news, we’d go to the store and people could tell there’s something wrong with her. Now they know this is Kaylee and she has progeria.”
To sign up for the Race for Progeria or to make a donation to the Progeria Research Foundation, go to www.sweetkaylee.com. To volunteer at the event, contact Tim Halko at 419.383.5179 or tim.halko@utoledo.edu.
What is progeria?
Progeria is a rare, fatal genetic condition characterized by premature aging in children. It is caused by a gene mutation.
Signs of progeria include growth failure, loss of body fat and hair, stiff joints, aged-looking skin, hip dislocation, generalized atherosclerosis, heart disease and stroke.
Children with progeria die of heart disease at an average age of 13.
There are 12 confirmed cases in the United States and 43 around the world.
Progeria has a reported incidence of about one in four million to eight million newborns.
Source: Progeria Research Foundation, www.progeriaresearch.org.
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