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Brothers thriving and thankful to have each other despite sharing rare medical condition

Posted at 6:00 PM, May 24, 2021
and last updated 2021-05-25 04:55:28-04

INDIANAPOLIS — Many brothers share a special bond, but two little boys from southern Indiana share a medical bond that only one in every 1.5 million people experience.

At first glance, Waylon and Ridge Wolka look like any other little boys.

"Ridge is a wild man and he loves and really enjoys — he just loves life and he really lives it to the fullest. He is just full of energy and Waylon is just so caring and helpful and a big heart, and a big-hearted kid," April Wolka, mom of Waylon and Ridge said.

However, the nine-year-old and 18-month-old brothers share a rare genetic disorder, a rare type of long QT syndrome.

"Waylon and Ridge have inherited a condition that makes them, that puts them at risk for developing very dangerous heart rhythm abnormalities where the heart beats so rapidly and erratically that it can't pump blood and people can drop dead from that," Dr. Leonard Steinberg, Pediatric Cardiologist and Electrophysiologist at Peyton Manning Children's Hospital said.

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During April Wolka's pregnancy with her first son, doctors noticed Waylon had a low heart rate but it was not until after he was born when they learned about his rare medical condition and started working with Dr. Steinberg.

"In this form of long QT syndrome, they get an abnormal gene from both the mom and the dad and so they are more severely effected. This condition occurs in a one in a one-and-a-half-million people," Steinberg said. "If both parents have the gene, the chances of having a kid with this rare form is 1-in-4, the chances of having a kid with the more common form is 2-in-4, 1-in-2. And chances of having a kid that is not affected is 1-in-4 so the chances of having two kids with this form is 1-in-16."

Waylon immediately started having surgeries shortly after he was born, received pacemakers and cochlear implants. Plus, he has dealt with cardiac arrests all his life.

When his younger brother Ridge was born in 2019, the family learned he too had the rare heart condition.

"He knows what it feels like to have defibrillator replaced or you know his wires changed, he knows what that exact thing feels like," Wolka said.

With the abnormal heart rhythms, the boys experience congenital deafness and cardiac arrhythmia. Through it all, the brothers are thriving and thankful to have each other.

"As a mom, I can understand as a mom and a dad, and it is not easy to see your kid going through surgery, but Waylon and Ridge will be able to be there for each other in a way that no one else can really understand," Wolka said.

Jervell and Lange Syndrome, which is a particularly rare type of Long QT Syndrome, results in issues with normal rhythm of the heart that can lead to a lethal cardiac arrhythmia and congenital deafness.

It's an autosomal recessive disorder, so there was no warning that it might occur since neither parent have the syndrome and it only presents itself when the child receives the recessive gene from both parents. So, even though Waylon was born with it, it was still pretty unlikely his brother would also inherit it.

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