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Published: Saturday, 7/13/2013 - Updated: 1 year ago

3-year-old with rare disorder joins clinical trial

40 children with premature aging to be at Boston Children’s Hospital

BY KELLY McLENDON
BLADE STAFF
Carly Kudzia of Whitehouse. She is a Progeria patient. Carly Kudzia of Whitehouse. She is a Progeria patient.
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A 3-year-old Whitehouse girl is traveling to Boston today to participate in a week-long clinical drug trial for patients with progeria, a rare genetic disorder characterized by premature aging.

Carly Kudzia, who was diagnosed with progeria in April, 2011, will join about 40 other children at Boston Children’s Hospital.

There are thought to be only about 90 children with the disorder in the world.

She will receive three types of drugs in the trial, including one called lonafarnib, a drug that helps with arterial stiffness and bone rigidity that is being investigated specifically as a treatment for progeria.

A medication for lowering cholesterol, as well as a drug to improve osteoporosis, will also be administered.

Carly’s mother, Heather Kudzia, said the visit to Boston will start with baseline testing to determine her daughter’s cardiovascular health, bone density, and weight — testing that Carly undergoes routinely.

Heart monitoring is a regular part of her medical visits too.

According to the Progeria Research Foundation, “all children with progeria die of the same heart disease that affects millions of normal aging adults (arteriosclerosis), but instead of occurring at 60 or 70 years of age, they may suffer strokes and heart attacks even before age 10.”

Mrs. Kudzia said Friday that she has told Carly about the trip and thinks her daughter is eagerly anticipating their travels.

“She’s looking forward to it. All I have really said is that we’re going to Boston,” she said.

Mrs. Kudzia plans to introduce her daughter to a 3-year-old with progeria from New Jersey named Zoey.

“She’s never met Zoey. We show her pictures all the time. I have met Zoey’s parents — we’ve just been playing that up. They’ll have many opportunities to play,” she said.

Meeting other parents who have children with progeria has been important to learning more about the disorder.

Mrs. Kudzia said she relied on Internet searches during the early days of Carly’s diagnosis.

“Of course I came home and checked the Internet and I found information. I keep in contact with Zoey’s mom. We chat a lot,” she said.

Searches led her to Kaylee Halko of Monclova Township, who also has progeria. She keeps in contact with Kaylee’s family.

“We all kind of help each other out as much as possible,” Mrs. Kudzia said.

To help with the costs of the clinical trial, the family is planning a fund-raiser, Carly’s Party for the Cure, on Sept. 27 at The Pinnacle in Maumee.

The event, which begins at 7 p.m., will feature local bands and a photo booth. Tickets are $30 per person.

More information about the benefit is at www.teamcarlyq.com/​events.

Contact Kelly McLendon at:

kmclendon@theblade.com,

419-724-6522 or on

Twitter @KMcBlade.



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