Imagine if your child was sick and there was a medicine that could make him or her better, but you weren't allowed to give it to them. That's what two northwest Ohio families are going through right now. The disease is progeria, which ages children ten times faster than normal. The families say waiting can be frustrating when time is working against you.
9-year-old Kaylee Halko of Monclova had an impromptu play date today with 2-year-old Carly Kudzia of Whitehouse. As the girls play with Kaylee's older brothers, their parents discuss concerns about the latest experimental drug that's hoped to slow the effects of the accelerated aging disease. A delay in FDA approval has the drug trial through the Progeria Research Foundation, or PRF on hold.
"I know they're just trying to be cautious," says Kaylee's mother Marla Halko. "But as a mom... It sounds very promising and its just sitting there."
Kaylee's on medicine right now as part of a previous drug trial. She recently dislocated her shoulder, but other than that her mom says she's happy and active.
"She doesn't have any health problems now and I don't want to wait until she has health problems before we're able to be on this drug," says Marla. "So I just wish that they could speed it up a little bit."
Carly isn't on any medicine right now as part of the experimental drug trials. Diagnosed a year ago April, the current drug trial had already started.
"PRF has put an application in to the FDA to start Carly and a few other children on the drugs that Kaylee and all the other kids are on," says Carly's father Ryan Kudzia. "So we're kinda waiting on that, and hopefully something will happen here soon."
Carly has been taking women's Rogaine since Christmas to try to stop the hair loss that's a classic symptom of progeria. The Rogaine is working, and dad says for now their daughter is happy and healthy. While they can't control the status of the drug trial.. they can raise money, and that's what they're doing. There's an event Wednesday, July 25th at the Chuck E. Cheese on Airport Highway. 15 percent of profits all day will go to PRF.
"Carly and Kaylee are gonna go out around dinner time just to have fun and say hi to everybody," says Marla.
Meanwhile, they wait for word on the drug trial, and hope they get the call soon.
"That's all we can do is wait," says Ryan. "Just be patient and wait."
Here are the upcoming fundraisers in our area for PRF:
July 25
Chuck E. Cheese Fundraiser
Airport Highway location
10 am- 10 PM
15 percent of all profits for the entire day will go to Progeria Research Foundation. Kaylee and Carly will stop by around dinner time to say hello and visit.
August 2
Freeze Daddy's
Monclova
5-9 p.m.
Kaylee will help at the window dishing out ice cream. 20 percent of sales from 5 to 9 PM will be donated to Progeria Research Foundation
Raffle tickets available for "Carly's Cart"
Refurbished, fully customized golf cart.
Raffle tickets $10
All proceeds to Progeria Research Foundation
Winner announced at Swanton Corn Festival August 18th
Need not be present to win
Info: teamcarlyq.com or Carly-q on facebook
August 18
Progeria Playland at Maumee Summer Fair
Carnival games, train rides, maybe even a dunk tank!
Progeria Research Foundation fundraiser
September 28
Carly's Party
The Pinnacle, Maumee
Silent Auction, great food and fun
Progeria Research Foundation fundraiser
October 13
Kaylee's Course
Monclova Primary School
5k walk/run, silent auction, kids activities and more
Progeria Research Foundation fundraiser
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