06282017Headline:

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

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 , 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.

Karrer Family 300x215 STORIES FROM THE HEART: While boy awaits transplant to beat incredibly rare condition, family accepts

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.

What Next?

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