Alumnus promotes progeria education

August 12th, 2015 Posted in From Our Alumni

By Vicki L. Kroll

Kaylee Halko and cone from Ron LoefflerKaylee Halko may look familiar. That’s because she’s helped millions around the world learn about progeria.

In 2009, she was featured on a TLC documentary, “6 Going on 60.” One year later, she won more hearts on Dr. Mehmet Oz’s TV show and then showed her spunk when she questioned Barbara Walters on “20/20.”

These days, the feisty 12-year-old is making folks smile in a commercial for the Make-A-Wish Foundation.

“We’ve been very careful about what shows we’ve done,” Tim Halko (UTCTC ’95), her dad, said. “We’ve stuck with respected shows that are educational.”

Kaylee’s star power is so bright, it’s easy to forget that she has the rare, rapid-aging disease.

“She’s always hamming it up,” Marla Halko, her mom, said. “Kaylee isn’t shy at all. She loves telling jokes and making people laugh.”

That sense of humor and bold spirit have helped her parents and brothers — TJ, 17, Brendan, 15, and Jacob, 14 — and family and friends cope.

When Kaylee was diagnosed with progeria in 2006, there were just 12 children in the nation with the genetic condition.

“Doctors at the University of Michigan basically told us to take her home and enjoy our time with her,” Tim recalled.

He and Marla learned about the Progeria Research Foundation, a nonprofit organization in Peabody, Mass., dedicated to finding a cure for the disease.

“We didn’t want to sit around and do nothing, so we got involved and started raising funds for the drug trial,” he said.

For eight years, Tim and Marla organized Kaylee’s Course, a run and walk in Monclova, Ohio. Silent auctions and raffles at the event helped raise more than $350,000.

“When we used to do the walk, a lot of people I worked with at The University of Toledo came out, and a lot of them worked at the walk and helped at the event,” Tim said. “And friends I made while going to school at UT came out, too.”

Tim joined the Medical University of Ohio Accounting Department as an accountant in 2006. After MUO merged with UT, he worked at his alma mater as accounting manager until 2008.

These days he is the controller at BX Solutions, a logistics transportation company in Swanton, Ohio. And Kaylee will start sixth grade at Eastwood Middle School in August.

“She’s on the dance team now for the Edge Dance Complex in Perrysburg,” Marla said. “And she’s excited: This year she’s going to do a solo in competition.”

Kaylee also is one of 67 children in the world who are part of another drug trial. There are 125 children with progeria in 43 countries, according to Audrey Gordon, president and executive director of the Progeria Research Foundation.

“In just over 15 years, the Progeria Research Foundation has realized remarkable accomplishments: the 2003 discovery of the cause of progeria, the first progeria drug trial in 2007, and the historic 2012 and 2014 discoveries that the drug lonafarnib is giving the children stronger hearts and longer lives,” Gordon said. “The Progeria Research Foundation has journeyed from total obscurity of this ultra-rare disease to worldwide recognition and a treatment, all in a remarkably short period of time.”

She added that scientists have made a connection between progeria, heart disease and normal aging.

“Finding a cure for one of the rarest diseases on earth may also help millions of adults who suffer from heart disease and the entire aging population,” Gordon said. “We could not accomplish all of these milestones without the support of our dedicated donors, families and volunteers.”

Kaylee and Tim HalkoTo help continue that effort, the Halkos held a fundraiser on Aug. 12, at Freeze Daddy’s, 8060 Monclova Road, Monclova. 10 percent of all sales went to the Progeria Research Foundation, according to Ron Loeffler, owner of the ice cream shop.

“Our biggest fundraiser is people donating to the containers we have out,” Loeffler said. “Last year we raised $2,100.”

Another hot item on Freeze Daddy’s menu: the Kaylee cone. Loeffler said he tracks 10 percent of sales of the kid-sized treat during the year and makes an annual donation to the Progeria Research Foundation.

“Kaylee is quite the character,” Loeffler said and laughed. “My wife, Teri, and I have a special spot in our hearts for the family. We just really want to help them out and help the foundation find a cure.”

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