Kaylee Halko's "Progeria Playland"

This week we paid a visit to 8-year-old Kaylee Halko and heard what it was like to meet one-year-old Carly Kudzia, who was just diagnosed. Kaylee also told us that you and the kids need to keep this Saturday open!

She gets to be the grand marshal in the parade at the 34th annual Maumee Summer Fair.

13abc's Susan Ross Wells told Kaylee that she thought it was a pretty big deal that Kaylee's in the parade.

"You know not everyone can be a grand marshal," she told Kaylee.

Kaylee: "Well, I see lots of people who are grand marshals."

Susan: "You do?"

Kaylee: "Yes, but the most best one is me, right?

Susan: "I think so."

Kaylee, her friend Madyson and other friends get to ride in a train in the parade.

Susan: "You have to practice the princess wave you know. Lets see."

Kaylee: "You have to do it slow motion."

Susan: "Oh, slow motion."

After the parade, visit Progeria Playland for a ride on the train.

"The kids can ride it for three dollars and all that money's gonna go to progeria and then we'll have eight different games that the kids can play," says Kaylee's mother Marla Halko. "We'll have a cupcake well, the first pitch game, just a lot of different other games that we think the kids will enjoy."

Kaylee, who's developed quite a sense of humor, showed 13abc's Susan Ross Wells all the fun prizes kids can win. There's a big box full of the donated toys in the family's house.

Family friend Jill Byrd has been coordinating the event. She says they still need some volunteers to help run the games, but the response so far has been amazing.

"We had Springfield volleyball coach call. She's getting her volleyball team to volunteer, Lourdes College volleyball coach, girl scout troops, you know, just so many people coming together and wanna help," says Jill.

Now they have two reasons to help. Kaylee recently met one-year-old Carly Kudzia of Whitehouse, who is newly diagnosed with progeria.

Kaylee's mother recalled what it was like for Kaylee to meet another child with progeria who literally just a few miles away. "She loved it," said Marla. "She's looking forward to sort of being a big sister, ya know, because Carly is so much younger than her but, she thinks its really neat that there's someone just like her in the area."

Right now Kaylee's getting excited about "Progeria Playland." Susan Ross Wells asked her what they'll do with all the money they raise on Saturday.

Kaylee: "Spend it?"

Susan: "It goes to Progeria Research Foundation, doesn't it?"

Kaylee: "And me."

Susan: "And you? You want a cut of the money?"

Kaylee: "Yes." {laughing}

Susan: "What, are you going to buy a car?"

Kaylee: "Yes. Maybe so."

Again, they're still looking for volunteers to help run some of the games at "Progeria Playland." They also need mini cupcakes donated for one of the kids games. If you can help, please call Jill Byrd on her cell phone at 253-777-8657 or at home: 419-893-6111.

Both families are doing everything they can to raise money to help pay for a new experimental drug trial that offers real promise for children diagnosed with progeria. They hope both girls will be a part of that drug trial.

More info on upcoming fundraiser for the Progeria Research Foundation:

Kaylee will be the grand marshal of the parade at the Maumee Festival on August 20. There will be train rides for $3. On Dudley in the parking lot across from police station, there will be a kids game area, with all money going to Progeria Research Foundation. Train rides start after the parade until 3 pm.

Kaylee's Course/Race for Progeria:
Saturday, October 8 in Monclova. Register online at http://www.firstgiving.com/prf/kayleescourse

You can also catch up with Kaylee on Facebook at Sweet Kaylee.

"Carly's Cart" Golf Cart Raffle:
Tickets will be sold at the Corn Festival in Swanton on August 20th, or you can click "contact us" on www.teamcarlyq.com to send Carly's family an email. Drawing is being held Saturday August, 20 at Corn Festival.

Carly's Party [Benefit for Progeria]:
Sept. 30 - Tickets are $25 each and include music by AlterEgo, appetizers, and one entry in the door prize drawing. There will also be silent auction - great products and services donated by numerous local companies. Tickets will be sold on www.teamcarlyq.com as well as Luce Chimney Sweep in Swanton and The Whitehouse Inn in Whitehouse.

Additional links:
- www.progeriaresearch.org

- www.teamcarlyq.com or to go directly to the team's donation page for PRF's ONE Possible Campaign: http://bit.ly/lpgLgI

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