Whitehouse toddler starts new progeria research trialWritten by Vicki L. Kroll | | firstname.lastname@example.org
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Carly Kudzia was all about watching Curious George on the family iPad.
She didn’t want to play, answer questions or have her photo taken.
That temporary shyness melted away when her dad, Ryan, offered her a couple of M&M Minis.
The 3-year-old made a beeline for her bedroom, where she showed off several Curious George stuffed animals and then began cooking in her kitchen.
She manned a cash register and carefully hid a credit card.
Then she bolted back down the hall and outside to her sandbox.
“She doesn’t walk anywhere,” Ryan said.
Carly climbed aboard her tricycle and rode in the driveway of her Whitehouse home. She hopped off her bike and pulled around a wagon. Then she threw and bounced a ball, clapping and laughing all the while.
“Carly has two speeds — Curious George and Mach 1,” Heather, her mom, quipped.
It’s been a big year for the little girl: Carly has more teeth and started going to preschool two days a week.
“She’s potty-trained now, so that’s exciting,” Heather said. “And she got a big-girl bed.”
And she started the triple drug trial for progeria. She is one of 22 children in the United States and 103 in the world with the rare, rapid-aging disease.
“It was kind of a roller coaster,” Heather said of the July trip to Boston Children’s Hospital to start the trial. “The day I had been dreading as well as anticipating was the infusion day; that was the first actual drug. I just remember being so scared because it’s a 30-minute infusion, how was my 3-year-old going to handle this?
“They were so great. Carly was playing with an iPad and she had numbing cream and they put a port in earlier in the morning, so it really wasn’t a big deal. They hooked her up to the machine, she was sitting on my lap and we were talking.
“And so I had the moment of relief that it wasn’t horrible and the realization that we were getting our first medicine, that it was really happening, and that we’d been waiting for two years,” Heather recalled, tearing up.
“Then the next day they brought in a gigantic shopping bag full of drugs, all the medicine we needed for the next six months. Boom, they just set it down. It was just like, finally, I’m doing something!”
While the Progeria Research Foundation awaits approval for a third drug trial, it expanded the current trial.
“We need to still move forward with these children who have been waiting, including Carly; that’s what we’re doing now,” said Audrey Gordon, president and executive director of the foundation. “Our focus with the drug trials and the children is getting them in, getting those other 40 kids in here so they can begin to take some drugs that we hope will help them.”
“The trial, with all the kids getting added, Carly included, costs $4 million,” Ryan said. “We’re having Carly’s Party for the Cure to raise money for her drug trial and support the Progeria Research Foundation.”
The third annual Carly’s Party for the Cure will take place at 7 p.m. Sept. 27 at the Pinnacle, 1772 Indian Wood Circle, Maumee. There’ll be about 60 raffle and auction baskets, appetizers, a cash bar and music by 56 Daze.
Tickets for the 21 and older event are $30 online at teamCarlyQ.com/events and $35 at the door.
“We’re working hard to raise money for the trial and at the same time, our eyes aren’t on just this treatment because it isn’t a cure,” Heather said. “It’s slowing things down, but our ultimate goal is a cure, so we need as much help as we can get.”