Business cards are often a tool for networking — listing job qualifications, contact information, maybe what school someone received their degree from.
But for Alex Kepner and Jennifer Fink, the black and white lettering printed on the small rectangular card stock, could literally save a life.
Alex is in Stage 4 chronic kidney disease. They’re trying to keep him off dialysis, but his kidneys aren’t doing well. He needs a transplant. It’s the ultimate Christmas wish.
He’s on the waiting list for a cadaver transplant. But it could be a long wait. Plus, cadaver organs don’t last as long as live organs, his mother said.
She’s willing to do anything to find her 16-year-old son a donor.
“Got kidneys? Want to share with Alex Kepner?” the business card reads. There’s also a picture of Alex on it — he’s wearing his big, square glasses and his nose and mouth are covered by a surgical mask. He’s flashing a peace sign at the camera.
Also on the card, is a phone number for the Penn State transplant team: 717-531-6092.
‘It’s not good’
At first, there were no words. Just some long stares and a deep embrace between mother and son.
“All I heard was, ‘It’s not good,’ and my brain slowed down,” Fink remembers of the day Alex was diagnosed. “I couldn’t even focus on what the doctor was telling me, and I never expected it to be this.”
They told Fink that Alex’s kidney function falls between 14 to 18 percent.
“‘What? I don’t understand this,’ I remember saying,” Fink recalls. “He was just supposed to be getting bloodwork done so he could start on an anxiety medication. This didn’t make sense.”
The doctors couldn’t tell Fink why her son’s kidney function was so low. It turns out it didn’t make sense to them either. The condition is so rare for someone so young, that Alex is now part of a case study investigating.
It would have been easy to break down at that moment, Fink admits — to let the direness of the situation kick in, paralyze her like she feared it would. But she knew it wasn’t the time for that.
“I wanted to be strong for him,” Fink said. “That’s part of any parent’s job, I guess. Make sure that you put on a show for your child.”
So, she tried to listen hard to what the doctors were telling her. She may not have understood all the big, scary words they were saying, but that didn’t matter. She would listen and Google later if she had to.
“It doesn’t really hurt that bad,” Alex snuck in as his mother was reciting his medical chart. There was no bitterness in his demeanor. “I get tired pretty easily, but I know it’s going to get better…even if it has to get worse first.”
For now, Alex is continuing with his normal routine. He’s a junior at Dallastown High School, which for him entails balancing homework, friends and playing Dungeons & Dragons with his mom — “yeah, we’re both huge nerds,” Fink laughed.
It was her son’s tenacity and resilience, that inspired Fink to take matters into her own hands.
“All the medication is doing is buying time right now,” Fink said. “And I’m not really OK with that. As a parent, I need to feel like I’m doing more — I have to.”
They realized the business cards and social media could help spread the message.
“I hand them out, I hang them up. Anywhere you can drop a business card, I drop them — window sills in businesses,” Fink said. “Just so they can look at my kid’s face.”
No one in their family is eligible to be a donor.
They’re looking for someone to give Alex the chance at a continuing a “normal life pattern,” his mother said.
Dialysis, Alex said, “literally changes everything you do.”
STORY CONTINUES BELOW GALLERY.
The waiting game
And so they wait.
The mother-son duo sits in their Red Lion home, prepared if Alex needs to go into dialysis.
“If you have no other alternative, you have to deal with it,” his mother said of dialysis. But they hold out hope. They know dialysis would be tough on the 16-year-old.
As of now, Alex said, he doesn’t feel all that sick. That’s one of the hardest parts.
“It’s so hard to explain how I feel because I don’t feel sick, yet they tell me it’s there,” he said.
Alex is on the autistic spectrum, so his mother worries that he doesn’t always know how to process his pain. She worries that something could go wrong and he wouldn’t know to speak up.
Even if he doesn’t feel that terrible, Fink said she’s noticed some changes. A lot of things have “slowed down” for him, she said. His kidneys aren’t flushing all the toxins out like they should, she added.
They’ve been on the transplant list since last September, but that wait can be anywhere from three to six years for a cadaver organ. His blood type is O+ and his insurance will only cover donors in Pennsylvania.
“I’ll do almost literally anything I have to to get the message out,” Fink said.
Someone who responds to the business card will have an opportunity to give someone the gift of life. Without this transplant, Alex’s health will continue to deteriorate.
They haven’t found a donor yet. But they have had support. Hershey Medical Center has received over 20 calls from people interested in donating a kidney to Alex, Fink said. And for that, she’s grateful.
“I want to thank everybody who had responded to us,” she said. “It’s restored some of my faith in humanity.”
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