Kaylee |
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June 2, 2006 - Susan Ross Wells talks with a family dealing with a child who has a rare genetic condition.Friday night's HealthBeat featured a story on a rare and deadly genetic defect called Progeria, a disease that ages children prematurely.
The Halko family of Monclova is determined to raise awareness and money to fund Progeria research. This is the first time the family has shared their story about 2-year- old Kaylee with Toledo. Kaylee was diagnosed with Progeria just before her first birthday. Her mom says at first they wondered, "Why did this have to happen to our family?" Finally, mom and dad agreed there was no use to feel like that, it was a waste of energy. Kaylee is happy and they began to concentrate on her being happy and making sure she was just a normal 2-year -old that happens to have Progeria.
According to the Progeria Research Foundation, Kaylee's currently on of only 14 children in the U.S. with the condition. Symptoms of the disease include failure to grow, loss of body fat and hair, aged looking skin, stiff joints, cardiovascular disease and stroke.
"When Kaylee was first diagnosed they told us the prognosis is 100% fatal and it still is, but within the last couple of years they've become a lot more optimistic." Three years ago researchers identified the gene that causes Progeria and now there is a drug being tested in mice to slow the aging process. There is hope that this is the first step towards finding a treatment and maybe even a cure. Kaylee weighs 19 pounds and stands 2 feet 8 inches tall. Her dad says she might grow another 3 inches or so. She may be small but Kaylee loves playing with her 3 older brothers. Her parents are overprotective of Kaylee and with good reason. With Progeria, the veins are very prominent on the head and a fall causes some nasty bruises. The Halkos go to benefits to help raise money for the Progeria Research Foundation. There will be an event on June 10 in Flat Rock, Michigan. "Miles For Miracles" is in honor of another 2-year-old with Progeria. "All the funds that they raise go straight to the Progeria Research Foundation." Kaylee's brothers are have their own fundraiser going at school. They are selling wrist bands from the Progeria Research Foundation. It is their way of helping their little sister. Brother Timmy says some teachers wanted to buy them and most of the kids in his class have them. Blue and white happen to be the Anthony Wayne colors, but it's also a way to say to Kaylee and her family that we are here to support you and help find a cure. To donate to the Progeria Research Foundation in Kaylee's name - http://www.progeriaresearch.org/ways_to_donate.html Miles for Miracles fundraiser information- www.littlelindsay.com Progeria Research Foundation - www.progeriaresearch.org |
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