Two miracle brothers saved from rare genetic disease by medical advancements
INDIANAPOLIS (WISH) — The Wolka brothers both have Long QT Syndrome, a genetic disorder that causes irregular heartbeats, and in some cases, cardiac arrest.
Waylon and Ridge Wolka had ICD devices implanted in their chests shortly after birth to help regulate their heartbeat, and occasionally deliver a shock to the heart during the case of a cardiac arrest.
Waylon is only 11 years old and the older of the two. He is a walking miracle after surviving cardiac arrest five times, thanks to this device.
“When I wake up I don’t feel anything, but I start crying,” Waylon Wolka said.
“Sometimes in the middle of a survival-type situation, you just zone in on what has to be done, and then it’s the aftermath that you just kinda fall apart,” April Wolka said.
The younger Wolka brother, Ridge, has not suffered from cardiac arrest. The brothers both have a rare version called Jervell and Lange Nielsen Syndrome which occurs in two to four out of a million people.
The family travels from Vallonia, Indiana to Peyton Manning Children’s Hospital for doctors’ appointments with Dr. Leonard Steinberg, who has nearly 20 years of experience in pediatric cardiology.
“For Waylon and Ridge, if the heart goes out of rhythm, it can’t effectively pump blood to the brain or other organs and they’re likely to pass out and look like they are having a seizure,” said Steinberg.
The gene that causes the heart issues also caused both brothers to be born deaf. They use cochlear implants to hear and the ICD devices to stabilize their hearts.
“These devices have revolutionized the care of both kids and adults with life-threatening arrhythmia disturbances where, as before, they lived with the constant fear that any moment could be their last moment,” said Steinberg. “These devices have provided a life-saving approach that allows them to carry on.”
April said her sons live mostly normal lives, but they take precautions to keep them safe.
“It’s a delicate balance between quality of life and trying to be a kid. I don’t always get it right, but I try,” said April Wolka.
April and her husband have to make sure medications are on time and their sons stay hydrated every day. The brothers will continue to meet with a cardiologist as they age to make sure their hearts are safe.