Local child fights rare genetic disorder, family working to raise awareness

EDEN, Md. – When you meet 9-year-old Trey Kearns you can’t help but notice his infectious smile and awesome personality. But what you probably wouldn’t notice is the rare life-threatening liver disease he’s fighting each and every day.

“Trey is a typical 9-year-old boy. He is incredibly active and he loves sports. He loves his brothers and he loves his friends,” said Trey’s mom, Tara Kearns.

For the past nine years, Trey has been suffering from Type 3 Progressive Familial Intrahepatic Cholestasis, also known as PFIC, which is an extremely rare genetic disorder that often leads to liver failure.

“His liver hangs onto bile and stores it up in his liver and it causes all sorts of side effects,” said Kearns.

Side effects like itching, a symptom Trey suffered from, from the time he was born until he was six years old.

“It was getting worse. He was waking up in the middle of the night crying. He would scratch until his skin would bleed. We used to have to put socks on his hands,” said Kearns.

After years of seeing different specialists, allergists, and dermatologists, doctors at Johns Hopkins were finally able to answer the question Trey’s parents had been wondering for years and diagnosed him with PFIC.

“It was something that we never heard of before. We had a lot of questions. I immediately wanted just information,” said Kearns.

For the past three years thanks to medicine, Trey has been living a relatively normal life, but his parents know that could be short lived.

“When he’s well he’s well. And we’re so thankful for that. But we’re absolutely getting to a place where as his liver becomes more diseased, it will start to affect him,” said Kearns.

Which is why they’ve decided it’s time to put him on the transplant list.

“I’m going to take a couple of tests like in two weeks or so and we’re going to get listed and then have a transplant,” said Kearns.

And throughout it all his mom says Trey has remained the boy that people see on the outside, a nine-year-old with an infectious smile and an awesome personality.

“He has just been telling people that it’s good news and he understands what a gift it is. He’s just a really great kid,” said Kearns.

Since his diagnosis, Trey’s mom has been working around the clock with other moms across the world who’s kids also suffer from PFIC to raise more awareness about the disease. To let others know they’re not going through this fight alone.

If you would like to learn more about this disorder you can head to the website that Trey’s mom and other families have created click here¬†

Categories: Local News, Maryland