January 28, 2010

Group Takes Aim at Sudden Cardiac Arrest

Filed under: Nonprofits — darren @ 6:57 pm

Jackie Renfrow - SADS

Jackie Renfrow - SADS

New chapter stresses need for youth heart exams

By William J. Booher
william.booher@indystar.com

Jackie Renfrow and Norma Johnson take to heart the risks of sudden cardiac arrest.

They know the pain first-hand of suddenly losing young loved ones to undiscovered heart defects.

To reduce the risks for others, Renfrow, 49, Franklin, and Johnson, 63, Fishers, want to raise awareness through the Sudden Cardiac Arrest Association’s new Indy Chapter headed by Renfrow. Johnson is among the first dozen chapter members.

The chapter is stressing the need for detailed heart exams for young people, particularly if they have fainting spells or seizures or a family history of heart ailments. Renfrow said the cardiac arrest deaths earlier this month of University of Southern Indiana basketball senior center Jeron Lewis, 21, and Chicago Bears defensive end Gaines Adams, 26, both from enlarged hearts, are just a couple of the latest tragic losses.

The chapter is emphasizing preparedness to try to prevent deaths when sudden cardiac arrest occurs. The chapter wants more people trained in cardiopulmonary resuscitation and more widespread availability of automated external defibrillators.

The portable defibrillators are designed to enable even the untrained to use them properly. The chapter hopes schools, businesses and sporting events are among gathering sites where they will be readily available.

The Indy Chapter covers the Indianapolis metro area and Southern Indiana.

“If I had read this story 10 years ago, I could have saved both of my kids’ lives,” said Renfrow, manager of food service for Perry Township Schools in Marion County.

Her son, Jimmy Brackett, died at age 22 in 2000, and her daughter Crissy Brackett, died at age 21 in 2002, both from sudden cardiac arrest due to an undiagnosed rare heart condition called long QT syndrome.

Both had a history of occasional seizures, Renfrow said, but in medical exams the cause was not identified.

The heart condition is treatable if diagnosed, she said.

Renfrow and her two grandchildren learned they have the same rare hereditary heart condition after Renfrow’s mother was diagnosed with the condition after a heart episode. Renfrow now has an implanted defibrillator to restart her heart if it stops.

The Brackett siblings had exams of their hearts during physicals for sports, Renfrow said, but not with an electrocardiogram to check the heart’s electrical impulses and an echocardiogram to obtain advanced imaging of the heart.

Also, she said, it is important for someone experienced, such as an electrophysiologist, to properly analyze what those tests show.

Renfrow said someone suffering sudden cardiac arrest will die after about three minutes without being treated with CPR and a defibrillator. This is different from a heart attack, a plumbing problem caused by blockage in the heart’s arteries.

Johnson said her grandson, Clinton Walker, 17, Stockbridge, Ga., died Feb. 7, 2008, of sudden cardiac arrest due to what a coroner’s report determined was sudden cardiac arrest due to congenital heart defects.

“Doctors misdiagnosed him altogether,” Johnson said. “It breaks my heart. We tried to find for so long what was wrong.”

She said doctors felt the seizures he had experienced were due to neurological or psychological problems and did not test his heart.

“You need to look for the signs in your children of having unexplained behavior and seizures. Just don’t accept it, check their heart,” she said.

She said Phillips Temple CME Church, 210 E. 34th St., Indianapolis, where Clinton’s uncle, the Rev. Oliver DeWayne Walker, is pastor, plans to raise awareness of sudden cardiac arrest on Feb. 7.

Additional Facts

More information To learn more about the Sudden Cardiac Arrest Association’s new Indy Chapter, covering the Indianapolis metropolitan area and Southern Indiana, go online to www.suddencardiacarrest.org or www.jimmyandcrissy.embarqspace.com.

January 10, 2010

Alex’s Lemon Ball

Filed under: Nonprofits — Tags: , , , — darren @ 7:29 pm
Liz & Jim Scott of Alex's Lemonade Stand Foundation

Liz & Jim Scott of Alex's Lemonade Stand Foundation

Yes. It is easier, she said.  There are many more happy times than sad times.  So from that standpoint, it has gotten easier.  However, every year that goes, it gets harder, because each year, we lose more.  We lose celebrating birthdays or sharing special occasions.  We lose a year of experiences and glances.  We wonder about what her life would be like today.  That makes it harder.

Liz Scott, Alex’s mother, shared these thoughts last night at the 4th Annual Lemon Ball hosted by Alex’s Lemonade Stand Foundation.  Her words resonated with me and brought me to tears.

I agree that life is good on a day to day basis.  We’ve adjusted to our new “normal.”  However, last night reminded me of how painful the loss was and continues to be.  As much as I want it to be, my life will never be normal, no matter how time passes. 

Last night’s event was painful, but it was also magical.  The room was full of 800+ supporters.  The organization has raised $30 million in five years.  I admire everything that the Scotts have been able to accomplish.  They are a shining example of how ordinary parents can make an extradorinary difference in the lives of strangers . . . all in the memory of their beautiful daughter.