TODAY

TODAY   |  April 21, 2014

Hope to It: Family turns tragic loss into help for others

After a Pennsylvania family lost their 3-month son to sudden cardiac arrest, they turned the tragedy into a way to help bring awareness to the number one killer of young athletes.

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This content comes from Closed Captioning that was broadcast along with this program.

>>> this morning on "hope to it," parents on a mission to help kids and their families.

>> they want to bring attention to the number one killer of kids during sports, sudden cardiac arrest .

>> one family is hoping to change that.

>> simon was a seemingly healthy baby. he had normal scores. all the normal health visits at that point were fine. and he just simply was 96 days old and we put him down for a nap and he didn't wake up.

>> phyllis and darren sudman did not know their infant son simon had a heart condition until after he unexpectedly died of sudden cardiac arrest . after testing, the sudmans found out that simon had long qt syndrome, a heart condition increasingly linked to sudden infant death syndrome . phyllis eventually learned that she too had the same heart condition .

>> had i had my heart checked, simon more than likely would be with us today. you know, unfortunately, i never had any symptoms.

>> we unfortunately learned a lesson the hard way. and we wanted to share that information with other families so that another parent didn't have to lose their child to a condition that is detectable and treatable.

>> the sudmans created a foundation called simon 's fund to get kids screened for conditions that lead to sudden cardiac arrest . they focus on active adolescents, because sudden cardiac arrest is the leading killer of young athletes. this free screening at vanderbilt university in nashville includes a standard sports physical with a stethoscope and adds an ekg and an echocardiogram.

>> adding an ekg to it heups that level of detection that we may be able to find something and prevent a bad outcome for a family.

>> simon 's fund has organized since 2005 , more than 60 kids have discovered previously undetected heart conditions, including high school cheerleader whitney jones, who has been athletic her entire life.

>> i was not expecting anything. i thought i was really healthy, so having heart disease was not something i thought i had.

>> whitney's diagnose was life-changing, but with medication and her doctor's okay, she is safely continuing the sport she loves.

>> i'm very glad that we know, because this disease can rob families of their loved ones with no warning, and if you don't know, you can't manage it. by knowing, we have at least the chance to manage it.

>> at every simon 's fund screening, a chance for knowledge and peace of mind .

>> you have to come in expecting and hoping for the best, but preparing for changes or bad information. so i was ready either way . i'm glad we got good news, though.

>> potentially life-saving news that serves as the legacy of a baby boy who did not get to live long enough.

>> this little 3-month-old boy has had enormous impact on these families. and because of simon , their kid is healthier and their kid will be okay.

>> well, in addition to organizing heart screenings, simon 's fund is pushing state governments to pass laws to prevent sudden cardiac arrest in youth sports. so far, three states have enacted this legislation. to find out where your state stands on these laws, please head to today.com.

>> at least some good came out of that.

>> absolutely. good in the face of unimaginable pain.