Kentucky family fighting Alport syndrome, all in need of kidney transplants

LEXINGTON, Ky. (FOX 56) — Imagine learning your child needs a kidney transplant to survive. Now, imagine your other child needs one too, and so do you.

The three have a rare genetic disease called Alport syndrome. 

All three are on the transplant waiting list at the University of Kentucky.

“It affects about one in every 50,000 births,” Massie explained. “It affects the way that the collagen develops in the kidney, so it deteriorates over time, and eventually your kidneys fail.”

Collins, 21, went into kidney failure in December 2024. He started hemodialysis sessions three times a week in January 2025. 

Massie, 22, went into failure in June of 2025. 

On top of all of that, Liles, 42, has also been diagnosed with kidney failure due to the rejection of her ten-year-old transplanted kidney. She will soon begin dialysis alongside her son. 

But now, as her kidney begins to fail again, while her children wait for theirs, the emotional weight is heavier than ever. 

“I actually went into failure in early June, but my kidney function dropped very drastically in 2021,” Massie added. “So I’ve just been kind of like riding that downhill slope since then.”

Collins is in a unique position, though. Because he’s diabetic, he needs a pancreas as well. 

“It’s a little bit of a different process,” his mom explained. 

Faced with such an unimaginable situation, the family is asking for support and potential donors. 

“This disease has affected our family; my kids are the fourth generation. So it started probably way before we knew about it. My grandma and my dad were on dialysis together in the early 80s,” Liles said. “So across our family, there’ve been nine transplants so far across five people.”

“There is something called the Paired Exchange Program, where if you’re not a match directly for one of us, they can test you and see if you’re a match for somebody else on the list, and then kind of like swap those donors around,” Massie said. 

A GoFundMe has been set up for Collins and Liles.

You can fill out the donor form if you are interested in helping this family.