Generations of Strength One Family’s Brave Fight Against Alport Syndrome

Generations of Strength

One Family’s Brave Fight Against Alport Syndrome

Sasha Bush

The Ashland Beacon

It’s every parent’s worst nightmare: watching your child suffer from a disease you’ve battled yourself—knowing exactly what’s ahead. Now imagine that nightmare multiplied by three. For Amanda Liles, this is her everyday reality. Not only does she live with Alport Syndrome—a rare and devastating genetic disorder—but both of her older children, Katelyn Collins Massie and Hunter Collins, are also fighting the same battle.

They are a family caught in a cruel cycle of inherited illness, clinging to hope, love, and the strength passed down through generations. And through their story, they are determined to raise awareness of a disease that many have never even heard of, despite the catastrophic impact it has had on their lives.

Amanda has known about Alport Syndrome for nearly her entire life. The rare genetic disorder primarily affects the kidneys, but it doesn’t stop there—it can also cause hearing loss and vision problems. In most cases, it leads to complete kidney failure. The genetic mutation damages the glomeruli—tiny filters in the kidneys—causing them to leak blood and protein into the urine and ultimately fail.

“We have all been aware that we have this disease from a young age,” Amanda explains. “I would say by age two for all of us, as soon as the testing was able to be performed.”

But the history of Alport Syndrome in Amanda’s family stretches back even further.

“My grandma and my dad were on dialysis together in the early 80s,” Amanda recalls. “My grandma received a transplant in October 1982, followed by my dad in February 1983. I think this was when my family, as a whole, received the diagnosis.”

Before that, Amanda believes there were generations of undiagnosed suffering—symptoms misunderstood, conditions misdiagnosed, lives lost without answers. Now, armed with knowledge, the Liles family is doing everything they can to stop that history from repeating.

Each member of the family experiences Alport Syndrome differently. When Amanda first entered renal failure in 2014, the symptoms were relentless.

“My main symptom was weakness and anemia,” she explains. “I required multiple blood transfusions through my last pregnancy, and my kidney function went progressively downhill from there after I gave birth to my youngest daughter.”

Katelyn and Hunter, Amanda’s older children, presented with entirely different symptoms.

“My son presented with memory loss and confusion,” she says. “My daughter had severe swelling. I had dangerously high blood pressure. It presents differently in everyone.”

Yet despite the variety of symptoms, Amanda says that for her children and herself, the diagnosis was never a surprise.

“We’ve always known what was happening,” Amanda says. “My family received the diagnosis before I was born. I remember my dad and grandma discussing all of the testing and biopsies they had to endure to reach the correct diagnosis. They went through this at the same time—much like my kids and I are now.”

Although the effects of Alport Syndrome are serious and ultimately life-threatening, Amanda says that her family has always strived to live as normal a life as possible—at least, until kidney failure takes over.

“There are so many of us that have it, and many women in my family who have been fortunate enough to not experience kidney failure. Until you go into full renal failure, you really are able to lead a normal daily life,” she explains. “Most of us failed sports physicals throughout school due to some of the symptoms, but other than that, we have lived normal lives.”

But that “normal” is fleeting for those who eventually reach end-stage renal disease.

Amanda is now on hemodialysis, as is her son, Hunter. Her daughter, Katelyn, performs peritoneal dialysis at home.

“There have been advances in medicine since the early 80s,” Amanda notes. “Our children now are usually started on lisinopril or a similar medication from a very early age in an effort to preserve kidney function as long as possible.”

These treatments, while lifesaving, are also life-altering. Dialysis is a grueling, time-consuming, physically taxing process. And for Amanda, managing all of this while raising two younger daughters still in middle school adds an extra layer of difficulty.

“I think the biggest challenge for me is being a single mom,” she admits. “Juggling their schedules with my dialysis schedule is difficult some days. My older kids and I live in different counties, so, as a mom, it’s difficult to not have direct access to help them out as much as I’d like.”

While the miles may separate them, the bond between Amanda, Katelyn, and Hunter is unwavering. They lean on each other—emotionally, medically, spiritually—every single day.

“Katelyn, Hunter, and I have a group text thread,” Amanda shares. “We often bounce our experiences, symptoms, and side effects off of one another to see what is normal and what is not. We stay in pretty constant contact regarding appointments, dialysis, and transplant appointments. It is nice to not go through it alone—although I would give my life for my kids to not be going through it at all.”

That unwavering emotional support is matched by the family’s inner strength. Amanda describes her relatives as driven, motivated, and determined to keep going despite everything.

“My entire family is pretty driven. While we aren’t able to work while on dialysis or immediately post-transplant, everyone has continued to work in their respective fields until they no longer can,” she explains. “My dad worked in the construction field until the day before he restarted dialysis in 2012. We all try not to let it keep us down long.”

Still, the emotional and financial burdens are immense.

Living with a chronic illness is expensive—and not just in terms of dollars. There’s time lost, energy drained, opportunities missed. Even with insurance, the financial strain is crushing.

“We aren’t able to work while on dialysis due to the schedule and how physically taxing it is on the body,” Amanda says. “There is a five-month waiting period for disability, so this creates a five-month period with no income coming in—and that is hard to navigate.”

To help cover the gaps, Amanda’s family started a GoFundMe account. Thankfully, their community has shown up in a big way. “Our community has been an amazing support,” she says gratefully. But beyond financial help, Amanda knows that what her family—and others with Alport Syndrome—need most is awareness.

Alport Syndrome affects an estimated 1 in 50,000 people, making it a rare disease—and that rarity comes with its own dangers. Misdiagnoses are common. Many doctors have never even heard of it.

“I’ve had to explain it to doctors before,” Amanda shares. “It just isn’t something that you see often in healthcare and even less so in the general public. I think our small community has pretty good awareness due to the decades that our family has dealt with it.”

She’s right. Most people haven’t heard of Alport Syndrome. Many don't realize that they, too, could be a carrier. And even fewer understand how they might help.

Amanda has a clear answer for that: organ donation.

“You can donate a kidney as a live donor and continue to live a completely normal life,” Amanda stresses. “There’s a lot of fear and misinformation about organ donation, in general.”

She and many of her family members work closely with organ donation foundations to advocate for better understanding and to encourage more people to become living donors.

Shelley Snyder, Executive Director of Donate Life Kentucky Trust, echoes Amanda’s passion, “The Liles family facing a complex condition like Alport Syndrome reminds us why education about organ donation is so important,” Snyder says. “Living kidney donation is a lesser-known way to provide the gift of life, but it is highly successful and central to our mission of saving lives.”

Even with the advances in medicine, with the support of the community, with the fierce bond between mother and children—this is a fight. Every day is a battle against a disease with no cure, against a healthcare system that often overlooks rare conditions, and against the uncertainty of tomorrow.

“We all have a pretty positive outlook on life,” Amanda says. “I think that comes with the territory when you know this just is what it is, and we can’t change it. I think everyone keeps a good sense of humor and makes the best of what we’ve been handed.”

But there’s something we can change awareness, support, and education.

The Liles family is living proof of what it means to persevere. To fight a generational disease not just with medicine, but with courage. They don’t want sympathy. They want support, understanding, and change.

They want you to know that rare doesn’t mean impossible. That silent suffering should not go unnoticed. That living kidney donation is not only possible—it’s life-changing.

Most of all, they want a future for their children that doesn’t look like the past.

“I would give my life for my kids to not be going through it at all,” Amanda says.

You can help be that miracle—for Amanda, for Katelyn, for Hunter. Share their story. Talk about Alport Syndrome. Consider becoming a donor. And if you’re able, support their GoFundMe and the foundations fighting alongside them. Because no family should have to live this nightmare alone.