Waylon and Ridge Wolka both live with a rare form of Long QT syndrome. But with the help of technology and doctors, they're enjoying life and having fun.
"I don't really know that it happens, and then when I wake up I don't feel anything," Waylon said."When I pass out, the device shocks my heart so I wake back up."Their mom, April Wolka, says the scariest part is not knowing when a cardiac arrest could occur.
"There's not like a warning ... and there's not really anything you can do to 100% prevent having a cardiac event," April said."It's a delicate balance between quality of life and trying to be a kid but trying to be protective at the same time.""People sometimes call me a robot because I have metal and a device in me," Waylon said."Sometimes the heart goes out of rhythm and people feel a palpitation or a flutter.
Treatment includes medication and, in the Wolka boys' case, an ICD. The device is like a pacemaker + AED combo attached to their hearts. "These devices have provided a life saving approach that allows them to carry on," Steinberg said."These kids can live into adulthood and have normal lives and normal life spans with technology just like this."
The brothers recently got to go to a Pacers game, and his bedroom is now all decked out in Pacers decorations.
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