KY mother and her 2 kids need kidney transplants. How you can help

Katelyn Massie and Hunter Collins remember when their mother, Amanda Liles, endured her first kidney transplant 10 years ago.

Liles considered herself lucky, finding a match within three weeks, even though she said doctors gave her about a 1% chance of doing so.

But now Liles needs another transplant. And so do the two children.

Massie, Collins and Liles are all experiencing kidney failure. They hope to be on the donor list at the University of Kentucky by this fall.

Collins, 21, of Ashland, said he was with friends earlier this year when he started experiencing symptoms of kidney failure. In June, Massie, 22, of Vanceburg, got sick and had an emergency chest catheter put in for dialysis.

And Liles, 42, of Ashland, was told last October her transplant was in “chronic rejection,” meaning her transplant was beginning to fail.

All three have Alport Syndrome, a rare disease that causes declining kidney function over time and can lead to hearing loss and vision problems, according to the Alport Syndrome Foundation. According to the foundation, fewer than 200,000 people in the U.S. have Alport’s, but it is common in Liles’ family.

Liles said Massie and Collins are the fourth generation of kids in the family with Alport’s. She said it started with her grandmother and father in the 1980s. Her grandmother lived 36 years on one transplant with no issues. Her father had two transplants.

One of her uncles had two transplants, and another had three.

“It’s just really rampant through our family,” Liles said.

Massie and Collins are both on dialysis, while Liles waits to get cleared for treatment. Dialysis has been difficult on the family.

“When you come off (dialysis), it kind of feels like you just ran a marathon, “ Massie said. “It’s just really exhausting.”

“Once I’m off of it, I’m just wiped out,” Collins said. “There’s not really much else I can do that day. I’ll come home and sleep from 6 p.m. to noon the next day. It’s rough.”

A test for Massie’s chicken pox vaccine showed insufficient antibodies, so she said it will be mid-September before she gets on the transplant list at UK. She had found a match last month before the vaccine-related complication.

Collins, who needs a pancreas and a kidney after having pancreatitis as a freshman in high school, is also having issues with the transplant list, Massie said.

Liles is waiting on a consultation before she can get on the list. She said the only thing she’s worried about now is her kids.

“If my kidney (transplant) ... were working, I would happily give that to one of my kids and go on dialysis in their place,” Liles said. “I’m not that worried about me. I’ll catch up.”

The family said they’ve been leaning on their community more than anything.

“Our community has really come together for all of us,” Massie said. “Sharing all of our facebook posts and registering to get tested.”

Massie said people can help by getting tested for a transplant to see if there is a match. There is a GoFundMe set up for Collins and Liles.

Collins is about to start college, Massie said.

Liles also has a 12-year-old daughter and a 13-year-old daughter. She said she is on a five-month waiting period to be eligible for disability benefits.

This story was originally published August 13, 2025 at 5:00 AM.