Family faced uphill battle with 16-year-old’s double lung transplant. Then came COVID-19

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SPRING HILL, Kan. (WDAF) - Life was already difficult for 16 year old Alicia Berkey and her family.  Just a couple of weeks ago, she was waiting for a double lung transplant. 

The call came. The family rushed to St. Louis for surgery. And now, the novel coronavirus has changed all their well-laid plans for recovery.  

The Berkey family is at St. Louis Children's Hospital, where Alicia's body is fighting to embrace two new lungs. Her mom and dad are doing all they can to make sure she doesn't get COVID-19.

Alicia was born at only 24 weeks gestation. She's always been on oxygen because her lungs never fully developed. It's only gone downhill since. 

"Her lungs were so sick, she needed to do it now," Joe Berkey said. "They were only functioning at 20 percent."

Nine days ago, Joe and Crissie Berkey watched their oldest daughter roll down the hallway for a life threatening surgery. However, the coronavirus could have made them second guess the moment they had waited so long for. 

"She could get COVID pre-transplant or post, and she would have a better chance of fighting it post-transplant," Crissie Berkey said.

Soon after Alicia's 11-hour transplant, the simplicity of watching their daughters chest rhythmically rise and fall brought intense relief. The first several days were a roller coaster, and now, she is exhausted and sore, but smiling.

 "I''m doing really good right now," she said.

Alicia has a long road of therapy and medication before her. She has to stay in St. Louis for at least three more months. 

But there's a toll on her parents, too. Joe almost wasn't allowed into the hospital for the surgery. Now, the pandemic means that if Alicia's mom and dad leave the hospital, they can't come back. That's especially difficult with three younger kids still back in Spring Hill. 

"The kids were supposed to be a part of healing process," Crissie said. 

They rented an apartment in St. Louis so they could all be together during the long ordeal. But as soon as the children arrived, they had to turn around and go home. Now, friends and caregivers are watching and homeschooling them around the clock.

"She told her doctors that she just wants a chance to have a really good five years of life," Crissie said. 

The survival rate for kids with lung transplants is only about 50% after five years.

But Alicia's family is believing God for longer. And Alicia is already making plans because she said she now has hope. 

"Maybe like breathing in the fresh air and running places," She said. "Once the school year comes, they told me I could run the hallways without being caught. I really want to do that."

The smiley 16-year-old wants to thank everyone for their support and send an important message home to Kansas City.

"I want everyone to stay home so it won't spread anymore."

So that, when Alicia does come home, she can get outside and go to school without a "stay-at-home" order. She said she wants to live life, not just beyond the confines of the ICU, but beyond the coronavirus as well.

As if the tremendous expense of a double lung transplant isn't enough, the Berkey family has been hit with additional expenses because of COVID-19. Because they can't leave the hospital and their three young children are still in Spring Hill, they're paying for childcare. They're also paying to eat in that hospital cafeteria three times a day because they can't leave.

If you'd like to help with some of this family's expenses you can donate to the children's organ transplant Association specifically for Alicia. Here is the link.

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