Young Hearts for Life: How screenings may help save our children

Kathryn Bender couldn't know it, but her death may have saved Christopher Storm's life.

Kathryn, a high school actress and dancer, collapsed and died unexpectedly before a performance with her Naperville North Orchesis troupe in 2005. Standing backstage, she had no idea she had Long QT Syndrome, a heart rhythm disorder that ultimately would cause her cardiac arrest. Had she, her family and her doctors known, the disorder could have been treated and kept in check.

Her death shocked parents of seemingly healthy teens and inspired her family as well as cardiologists to wonder how they could keep other teens from dying from undetected heart disorders.

Shortly after Kathryn died, Midwest Heart Specialists cardiologist Joseph Marek created Young Hearts for Life, a nonprofit group that visits high schools in DuPage County and surrounding suburbs giving teens free electrocardiograms in the hopes of detecting irregularities that may point to a previously undiagnosed heart ailment.

Since 2006, the organization has screened more than 100,000 teens and referred nearly 2,000 for further testing - Christopher Storm among them.

Storm had an ECG in his freshman year at Waubonsie Valley High School that led to a diagnosis of hypertrophic cardiomyopathy and successful heart surgery.

The Naperville man now is a freshman at Indiana State University who credits his health to the Young Hearts for Life screening and the Kathryn Bender Memorial Foundation, which honors Kathryn by buying portable ECG equipment for the Young Hearts testing.

On Saturday, Aug. 23, Storm will be among the hundreds of runners and walkers raising money in the eighth annual Kathryn Bender Memorial Foundation 5K Fun Run for Healthy Hearts.

Today, Storm shares his experience and his commitment to the organizations that may have saved his life.

Christopher Storm

Young Hearts for Life is a nonprofit organization that performs free ECG testing to any student who signs up. My mother, seeing that it was free, took advantage of this opportunity and signed me up my freshman year because usually such tests are not free.

When YH4L came into my school and tested me, they discovered an abnormality with my heart. Later I was diagnosed with hypertrophic cardiomyopathy, or HCM, a disease that affects the heart muscle and causes it to thicken. This disease closes off blood flow and makes the heart work harder just to pump blood to the rest of your body.

I was an avid athlete and all of that had to stop. I was instructed to stop immediately and told I probably would not be able to play at that competitive level ever again. My freshman summer consisted of having surgery to implant a defibrillator and pacemaker.

Many people look at my story and think it is a tragedy. I look at it and think it is a blessing. If YH4L hadn't found this disease, I would be another student who could have collapsed with no warning and I may not have survived.

I have been given an opportunity to share my story and to educate people about the benefits of this program. YH4L along with the Kathryn Bender Memorial Foundation have given me the best coping mechanism anyone could ever ask for: Sharing my story in honor of those who cannot. Getting the word out to parents and kids to make sure no one has to go through losing a loved one.

Although I have not been to the Kathryn Bender Memorial Foundation 5K yet, I have spoken at other events for the organization, events where you can show your support and also get informed about the dangers of these silent but deadly heart diseases. When people ask me, I tell them with the utmost honesty that these events have changed my life and will change yours too. They make you look at life with a totally new perspective and make you cherish life that much more.

Both Young Hearts 4 Life and the Kathryn Bender Memorial Foundation are nonprofits, so all of the money raised goes to testing more students to make sure no one ever has to go through losing a loved one again. You can donate to YH4L on its website, yh4l.org or at any of the Kathryn Bender Memorial Foundation's events.

If you go

What: Eighth annual Kathryn Bender Memorial Foundation 5K Fun Run for Healthy Hearts

Why: Proceeds help buy ECG machines that provide heart screenings to teens through the Young Hearts 4 Life program

When: Check-in and registration begin at 8:30 a.m. Saturday, Aug. 23; race begins at 9 a.m.

Where: Football field/track at Naperville North High School, 899 N. Mill St., Naperville

Info: kbmf.net