Toddler Battles Rare Aging Disease - Tri-State News, Weather & Sports

Toddler Battles Rare Aging Disease

Reporter: Shannon Samson
New Media Producer: Rachel Chambliss

Sarah Kennedy was born looking perfect, but she soon stopped growing and started aging. The diagnosis of the rare genetic disease, progeria, devastated her family.

They've had some time to get used to the idea, only to hit a turning point this year - one that is simultaneously bringing more fear and more hope.

Sarah Kennedy is crawling, not because she can't walk, but because she's pretending she's a cat. She also likes to pretend she's just like her new little brother, Nathan.

Cheryl Kennedy, Sarah's mom, says, "She compares herself to being a baby a lot, and I think that she thinks that because they're about the same size. And she's like, 'Well, if he's a baby, then I'm a baby, too.'"

Her size must be confusing for her. She weighs only 15 pounds, but her obvious differences from other kids don't seem to hold her back. On the contrary, she's kind of a celebrity.

"She gets free candy. Every time we take her to a restaurant, people want to buy her food. It's wonderful; she feels special. She doesn't feel different like in a bad way; she feels different like everybody just loves her," describes Cheryl.

Sarah is quickly approaching her third birthday. It's cause for both celebration and anxiety since it's the age some children with progeria have died from age-related diseases like heart attack and stroke.

Cheryl states, "It's an exciting birthday, but at the same time, it's kind of like, 'oh no,' you know. Now, we've got to start watching out for that stuff. How does a 3 year old tell you she's having a stroke?"

This year is also exciting because researchers hope to start clinical trials for breakthrough drugs called FTIs that have been shown to reverse signs of progeria in lab mice. They may not be a cure, but the drugs could add years to these children's lives, many of whom don't make it past their 13th birthdays.

Sarah, for the most part, feels good; however, she's starting to show signs of arthritis in her knees. And these kids tend to be very intelligent, and Sarah is definitely bright.

Cheryl concludes, "I just want her to be around for a longtime. That's all I want."

The Progeria Research Foundation wants to start a clinical trial on the new drug therapy in March, but first needs to raise $2 million to fund it. For more information about making a donation, go to their Web site.

Evansville will hold its first Progeria Walk in March, too; details will follow.

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