Local girl appears on national television - 13abc.com Toledo (OH) News, Weather and Sports

Local girl appears on national television

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Progeria is known as the aging disease. It is a rare, fatal, genetic condition that only affects about 100 children around the world. Several of them live in our region and one of them, Carly Kudzia, is about to be featured on national television.

Carly is an amazing little girl who may change the way you look at life. She and her family recently traveled to New York City for the taping of the Katie Couric show. They're hoping the show will bring more attention to progeria and help unlock the answers about the extremely rare disease. Heather Kudzia says just like most four year olds, her daughter Carly has lots of energy, "There are some things Carly can't do, but there are a lot more things she can do!" Carly is one of less than two dozen children in the United States with progeria. Children with the disease age up to 10 times for every year they're alive.they die of heart disease or stroke.

Carly and her parents will share their story with a national TV audience Monday, July 28th on the Katie Couric show, "They rolled out the red carpet for us. Carly and a little boy with progeria from Kentucky were on the set. They took us to the Statue of Liberty it was non-stop. It was only two days but it was a lot of fun!"

Carly's dad Ryan Kudzia is honored they had the chance to share their story, "It was probably a once in a lifetime experience to meet someone that famous and to tell our story." The Kudzias say Katie was so inspired by another young man with progeria who died earlier this year that she wanted to do another show in his honor. His family started The Progeria Research Foundation. Carly is part of an all expenses paid drug trial in boston through the foundation. The trial uses three drugs in an effort to improve the cardio vascular systems of the children with progeria, "The Progeria Research Foundation means hope to us without them we would not have known what to do."

Heather says there have also been scientific workshops to help find a cure and those workshops are gaining momentum, "The first meeting only had about ten researchers now there are about 100 scientists who attend from all over the world and they are all working on different aspects of finding a cure. There is a lot of progress being made and hopefully we'll see the benefits of all that work in the next clinical trial."

Once again, Carly's story will be part of the Katie Couric show on Monday. It airs at 3pm right here on 13abc. The Kudzia's host a fundraiser every year called Carly's Party for the Cure. It's September 26th at the Pinnacle in Maumee. In just the last three years they're raised about $150,000 for The Progeria Research Foundation. Find out more at facebook.com/TeamCarlyQ

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