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STORIES FROM THE HEART: While boy awaits transplant to beat incredibly rare condition, family accepts ‘new normal’

Published: 10:18 am CDT, September 26, 2013

Rylan Karrer has to sit on the sidelines. He doesn’t have the energy to run, jump and play like other 10-year-old kids.

His heart can’t handle it.

Rylan is dealing with a one-in-a-million condition that prevents the chambers of his heart from filling with blood. The only solution is finding him a new heart, and that’s not easy either, as the donor must have the same blood type and weigh within 10 pounds of Rylan.

So while his sister plays softball, Rylan watches and waits. He listens to audiobooks starring Percy Jackson and dreams of climbing Mount Olympus, all the while waiting for the day when he will again be healthy enough to do more than pretend.

“If we had to choose any of our four children to be able to handle it – not that we would want to, but if we had to – he would be the one,” said Kristina Karrer, Rylan’s mom. “He’s really done amazing.”

***

 

In 2008, the Karrers were living in La Pine, Ore., when Rylan’s dad, Andrew, got a job with the Montgomery County (Texas) Hospital District. He and Kristina let their two oldest children – daughter Andreya and son Dakotah, then 16 and 14 – help decide whether to move. They were willing to leave their small town, so the entire family – including Rylan and his sister Jenna, then 5 and 7 – relocated to Montgomery that July.

Now the family believes there was another reason they were lured there: to be within an hour of Houston and the Texas Medical Center, the largest facility of its kind in the world.

Their medical journey began in July 2011.

Rylan had been having a hard time keeping up with the other kids in baseball, and he didn’t seem to be growing. His tonsils were removed in hopes of that being part of the problem. However, six weeks later, Kristina noticed Rylan having symptoms of sleep apnea, so she took him to a different pediatrician.

This doctor noticed a heart murmur, and ordered an X-ray. It showed that Rylan’s heart was enlarged. The Karrers weren’t worried, though, as they were told that sleep apnea can cause the heart to enlarge.

On Sept. 30, 2011, Kristina and Andrew took Rylan to a pulmonologist to further investigate his sleep apnea. They soon discovered that wasn’t why his heart was enlarged.

The pulmonologist called in a pediatric cardiologist from Katy, a city closer to Houston, to see Rylan that same day. After multiple tests, the doctor told Kristina and Andrew that Rylan had an extremely rare heart disease.

His condition is called restrictive cardiomyopathy(RCM), and it’s the rarest form of cardiomyopathy. RCM can be difficult to detect, and can go unnoticed for the majority of someone’s life. When the pediatric cardiologist explained it all to Kristina and Andrew, “we were just utterly shocked and blown away,” she said.

The pediatric cardiologist had only seen RCM once in his career. Realizing Rylan needed more expertise than he could offer, the doctor personally delivered the boy’s file to doctors at Texas Children’s Hospital in Houston.

***

Before the family could even adjust to the diagnosis, Rylan was off to see dozens of specialists. While doctors determined whether he was even eligible for a transplant, Kristina had to make sure their insurance would even cover a transplant.

“It was very anxiety-filled,” Kristina said. “We felt relieved when they said he was eligible because I just can’t imagine if they would’ve said ‘no.’”

Rylan went on the list Nov. 8, 2011, nearly 700 days ago. Around the same time, friends started an “I (Heart) Rylan” page on Facebook, and Kristina used it to keep family and friends updated on Rylan’s condition.

Soon, the page became much more.

***

The surge in page views came in September 2012, courtesy of a family that had just lost their son to a congenital heart defect. They used their “I Love Liam Lyon” page to direct followers to Rylan’s page.

Now, nearly 18,000 people “like” Rylan’s page. Strangers write to tell Rylan they’re praying for him. People with similar struggles have reached out for support. On June 17, a grieving mother made a pledge to honor her son’s death with a donation to the Karrers.

Staffers at the American Heart Association’s Houston office learned about Rylan’s story from the Facebook page. The Karrers were invited to share their story at this year’s Montgomery County Heart Ball. The crowd was so captivated and inspired that the event raised a record of nearly $900,000, including six spontaneous gifts of $10,000 after Rylan’s story was shared. Andrew did most of the talking, with Rylan thanking everyone for their support.
The American Heart Association funds more cardiovascular research than any organization outside the federal government,  having invested in excess of $3.5 billion. The organization has funded research by 13 Nobel Prize winners and has been part of many groundbreaking discoveries that could help Rylan, including advancements in heart transplantation.

At a Go Red for Women luncheon, Rylan met fellow young patients Anthony Haley and Anna King.

Anthony received a heart transplant in January. He told Rylan that instead of worrying about the transplant, he should look forward to all the things he will get to do once he has a new heart.

“Having someone your own age who’s been through it – it was really powerful,” Kristina said.

Anna and her family bonded with the Karrers because of the similarity of their circumstances.

The Kings moved from New York to the Houston area on Sept. 30, 2011 – the exact day Rylan was diagnosed. Anna, 13, was diagnosed with dilated cardiomyopathyon March 30, 2012, exactly six months later.

“I swear that our families are lost soul mates,” Kristina said. “We are on parallel paths.”

***

Before his heart condition was diagnosed, Rylan was shy. Now he’s opening up more.

When people ask why he’s in a wheelchair, he likes to say he broke his pinky. And when anyone asks why he wears a mask, he sometimes says he’s a ninja in training. (He actually wears it as a precaution. If he gets sick, his body would not be able to accept a heart and he would have to be taken off the transplant list.)

Through the humor, Kristina sees the questions from strangers as opportunities to educate others about the challenges Rylan faces.

The hardest question Kristina has ever received was from her daughter Jenna.

At church, someone asked Jenna how long Rylan could live until he gets his new heart. Jenna told her mom about the encounter and then asked the same question.

“‘I don’t know,’ was obviously my answer,” Kristina said, “but that heart will come. It will come.”

***

The Karrer family has had to adjust to what Kristina calls their “new normal.”

It’s a normal where Rylan goes to school via robot – a video hookup that lets him virtually attend from the healthy haven of his home.

It’s a normal where he makes a list of all the things he wants to do when he gets his new heart: ride a bike, play baseball, kick a ball.

As part of their new lives, the family educates people about heart disease and gives them the opportunity for kindness.

Kristina said this “new normal” has made her close family even closer.

“We have worked through so many things,” Kristina said. “We never know what tomorrow brings for us, and this just puts it in your face more.

“As a family, we have worked through so many emotions. Nobody ever knows what tomorrow will bring, but a diagnosis like this brings it to the forefront and makes you count your blessings daily.”

***

Do you know a “Story from the Heart” we should tell? 

Send an email to stories@heart.org that’s as brief or as detailed as you’d like.

Previous “Stories from the Heart” include:

She ran a 5K and had cardiac arrest the same morning; now she’s an EMT, AHA volunteer

Photos courtesy of Karrer family