The unexpected loss of a vibrant 10-year-old girl, has one mid-Michigan family vowing to change the way heart screenings are done.
London Eisenbeis was a 5th grader in Grand Blanc. No one knew about the underlying heart condition that would claim her life.
But, if life-saving screenings were done earlier, things might have been different.
Through genetic testing, London's family learned she passed away from cardiac arrest brought on by Long QT Syndrome.
They had no idea she had the heart condition.
So how can other kids be protected from this tragic death?
"We really want to just help every kid we can and it breaks our hearts," explained Jennifer Shea.
She manages the student heart check program with Beaumont Hospital in Royal Oak.
"We believe that students should have an EKG and Echo-cardiogram when they're in their teen years, to help prevent sudden cardiac arrest, to help give them an idea that something is wrong, before something goes wrong," Shea explained.
They hold screenings every few months where Shea said they typically catch a significant issue in 1 out of 100 students.
"Sometimes that's something that can just be fixed with a quick surgery, like an ablation, where they zap the misbehaving part of the heart and then everything's fine. Sometimes it's something more serious," Shea said.
The tests are life-saving and Shea is able to offer them for free only because her team raises money throughout the year.
"Your insurance is not gonna cover it most often, because if you don't have symptoms, there's no reason to go get an EKG or an echo cardiogram," she said.
That's just one reason why Shea said the heart screens are available just to teenagers.
She explained, "Our program chose 13 because the most common condition for student athletes, young athletes in the country die from is hypertrophic cardiom apathy."
Shea said the defect typically appears when kids are going through puberty.
"So if we were to screen younger kids, we wouldn't be able to find really what we're looking for potentially and then they might not come back again and still be able to develop it later on," she said.
Plus Shea added, right now, most experts rely on sports physicals to catch any symptoms or potential problems. But, she's concerned because she said that doesn't always work.
"We've had kids that come to our screening program that have reported shortness of breath and were just told they had exercise-induced asthma and given an inhaler. And then when they came to our screening, they found they actually had something way more serious than that," she explained.
That's why Shea became a member of the Michigan Alliance for the Prevention for Sudden Cardiac Death in the Young. She wanted to make sure people are prepared, if the condition isn't caught and someone does fall unconscience.
"What we want them to be able to do is to respond with the AED in an appropriate amount of time, which is at best three minutes. And so, that takes a lot of coordination and it's something that you really need to practice," she explained.
She's hopeful the life-saving AED drills will soon be mandated in schools across the state.
"We have multiple fire drills each year in school and the last time a child died in school because of a fire was in 1927," Shea added.
London's Mom plans to fight right along Shea's side, in honor of London.
"If she could be here today, I know that she would be doing exactly what we want to be doing right now. And, she would be the number one advocate for it," Tina Eisenbeis said.
As for heart screenings, Tina and her sister Dr. Kristina Nikolakeas, a family physician, are crafting legislation that would enforce genetic testing for heart defects at birth.
"There's too many gaps in evidence right now to recommend EKG screening for children under 14 years old, so I think that the screening at birth is something that's really important and attainable," Dr. Nikolakeas said.
She explained the tests would catch a number of issues.
"So we're hoping to get that proposal out and hopefully they will accept it," she said.
London's inspiration continues as they take the fight into their own hands.
"Even though I have to be going through this right now, at least in her name, let's save some other children," Tina add
If you'd like to help, Shea encourages you to ask your child's school if they're heart safe. Do they have an AED? Do they do any drills?
And, for more on London's legacy, click on the 'Related Links' section of this story.