Local toddler battles rare disease - 13abc.com Toledo (OH) News, Weather and Sports

Progeria is a disease that only affects one in every 8 million children. It causes them to age rapidly. In fact, it's so rare there are less than 25 cases here in the United States. Little Carly Kudzia of Whitehouse is one of them, and her family is hoping you can help find a cure.

There are just 95 cases of progeria worldwide, 22 of them here in the United States. Three of them are right here in our region.

Carly's mom Heather says she was diagnosed with progeria last April when she was just 10 months old, "Essentially kids with progeria age 7-10 times faster for every year they are alive."

Amazingly Kaylee Halko, another little girl with progeria, lives right down the road from Carly. Carly's dad Ryan says the Halko family has been an enormous help during this difficult journey,"It's been someone to lean on, to ask questions and they've really paved the way as far as getting the awareness out."

Carly's mom Heather says it is incredible that with only 22 cases in the United States, the two little girls live just a few miles apart,"There's already a lot of awareness in this community and we are working to build on that, so instead of kids and adults staring, they will smile and wave and recognize us and support us, and they really have."

So far there is no cure for the disease, but there is promising research. Just this week results of a drug trial were published and the Kudzias say the trial does offer hope. Carly was born after that study was done, but her family is hoping she will be able to be part of another drug trial soon. In the meantime, Ryan says they do a few extra things to fight back, "She gets a growth hormone shot every night, she gets women's rogaine to help with her hair growth and that does appear to be helping. She gets dietary supplements and we are working with a pediatric dietician."

Heather says Carly is just like any other child her age,"She's funny, she has a great sense of humor,she's smart, she's very busy and she loves curious George. She has hit all the milestones for a two year old she walks, she talks, she's bright."

So far, the Kudzia family has raised more than $25,000 for the Progeria Research Foundation, "Once you get past progeria it's like what's next? Let's go, let's raise money and find a cure and do it fast. I believe it is going to happen."

You can help the Kudzia family raise even more money. They are hosting an event called Carly's Party. It's Friday, September 28th at The Pinnacle in Maumee. Doors open at 7pm. Tickets are $25 dollars and you can buy them at the door.All the money raised will go to the Progeria Research Foundation to fund clinical drug trials. If you can't attend the party you can still make a donation to the effort.

As we mentioned, there are three children with progeria in our region. The third little girl lives in the Flat Rock, Michigan area.

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