Woman looks to aid others after tragedies

Local News

October 26, 2009

By Ryan Palencer The Hendricks County Flyer Mon Oct 26, 2009, 03:53 PM EDT

INDIANAPOLIS — After losing two of her children to Long QT Syndrome, a genetic cardiac disorder, an Indianapolis woman is taking action.

Jackie Renfrow’s son Jimmy Brackett, 22, died April 15, 2000, and her daughter, Crissy Brackett, 21, died July 25, 2002. At the time of his death, Jimmy was married and had a 2 year old daughter named Alexis.

“They actually died in their sleep,” Renfrow said. “With Long QT, that happens a lot. They both had seizures in their sleep.”

Though her children showed all of the symptoms of having the disorder, Renfrow said doctors had failed to diagnose them until it was too late.

“We had been misdiagnosed,” she said. “Ten months after my daughter died, they found that my mom had Long QT Syndrome. She was the carrier, so now all of us have it except one sibling. It really slows down your heart rate. For years, we thought we had nerve problems, but all along it was our hearts. It was nothing for one of us to just fall over with a seizure.”

In addition to Renfrow, her mother, and her two children, her sister and her children also carry Long QT.

Though the disorder is passed down genetically, it is not necessarily a death sentence.

“It’s very preventable,” Renfrow said. “It’s not like a cancer and it’s not terminal. You can get an internal defibrillator and what’s called a beta blocker, which keeps the blood flowing smoothly.”

Renfrow said heart screenings should be universal.

“I don’t feel that it is important just for athletes to be screened,” she said. “Every child should be screened. I would like to have a bill passed in Indiana that every public place has to have an AED with a plan of action. Everybody should know CPR. You never know when it’s going to happen.

“I started a chapter for the Sudden Cardiac Arrest Association. They’re based out of Washington, D.C. Of course my passion for doing this is because of the death of my kids.”

Since establishing the chapter here, Renfrow assists with fundraisers and cardiac screenings. One of the fundraisers is the 19th annual Holiday Craft Show, which this year runs from 9 a.m. to 4 p.m. Nov. 14 at the Hendricks County 4-H Fairgrounds in Danville. The event will be in the Hendricks Power Exposition Hall.

“(The event) is going to go toward cardiac training for AED placement in schools or other community places,” Renfrow said. “I’m trying to reach out of people whose child might have these symptoms.”

In addition, Renfrow is using the events to help spread the word.

“Now I am CPR certified, so now I need to get with the fire departments and schools to make sure that there are AED machines,” Renfrow said. “I feel like students probably even need to learn CPR.”

For more information, e-mail Renfrow at jackie_renfrow@yahoo.com. There is also a website at www.jimmyandcrissy.embarqspace.com.

ryan.palencer@flyergroup.com

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