Rockport Toddler's Rare Disorder Challenges Family - Tri-State News, Weather & Sports

Rockport Toddler's Rare Disorder Challenges Family

Sarah Kennedy Sarah Kennedy
Sarah and mom Cheryl Kennedy Sarah and mom Cheryl Kennedy

Reporter: Shannon Samson

Progeria is a rare genetic condition that causes children to age rapidly. Only seven children in the U.S. have the condition, and one of them lives in Rockport, Indiana.

Hutchinson-Gilford progeria syndrome is named for the two English doctors who first described it and the Greek word meaning "prematurely old."

It's genetic, but not passed down from generation to generation. Instead, there is only a one in four to eight million chance of this mutation that likely happens right before conception and when it does, the results are heartbreaking.

At Nana's house, there are plenty of pictures of boys... And then finally a girl.

After having a son, the Kennedy family got their perfect little girl..with little feet and tiny hands. But soon, they became too tiny, and her skin was looking stretched and thin.

Cheryl Kennedy is Sarah's mom. "We went to Kosair and they did every test imaginable on her because they could not figure out why she quit growing."

Finally, a geneticist took one look at Sarah and said a word her parents had never heard before: Progeria. Cheryl says, "Before we went to see this doctor, we were prepared for bad news... but that bad news, it was...it was heartbreaking."

Scientists believe progeria is caused by a mutation in the gene called lamin-A, which produces a protein that holds the nucleus of a cell together. When the protein is defective, the cellular instability leads to premature aging and everything that comes with it: High blood pressure, arthritis and increased risk for stroke and heart attack.

And then there is the hair loss and transparent skin. At age one, it's already evident in Sarah. Cheryl says, "When you're a mom, you think about your kids and their feelings and how do you explain that one?"

But her mom says one look at this sweet child makes it impossible to stay upset. However, with no cure in sight, the future is grim. Children with progeria usually die of heart disease around 13 years of age, and as that year approaches, there are constant reminders that time is running out. Cheryl says, "I mean I can't imagine looking at my five year old and she's looking like an 80-year-old woman, I can't."

And she's praying she won't have to.

Is there anything for her now? She does some physical therapy to help her with her arthritis. She takes one aspirin a day to ward off heart disease. After that, her parents feel like they're on their own.

Finding a cure can only be possible with donations to organizations like the Progeria Research Foundation. For more information about progeria, go to The Progeria Research Foundation website at www.progeriaresearch.org.

A trust fund has been established in Sarah Kennedy's name at Old National Bank to help with medical expenses. There is also a golf scramble fundrasier planned for April 22, 2005 at Evansville's Eagle Valley Golf Course. Call Chris Kempf at (812)437- 6560 for more information.

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