Randi Rering, now 18, has battled and survived a rare liver disease and wants to help others

By Maridith Yahl
NKyTribune reporter

“She was sick from day one. I could tell something wasn’t right,” soft-spoken Pam Rering said about her daughters’ astonishing life.

Randi Rering, a vivacious young lady, was born with Progressive Familial Intrahepatic Cholestasis (PFIC), a very rare, genetic liver disease. Although Randi is now 18, both she and her mom have trouble explaining the disease.

This gracious family shares their journey, sitting on the couch in the living room, with their multiple cats and dogs, a mini-clinic full of supplies is set up on a table for Randi’s care.

“It’s really hard to describe,” Pam says after Randi deferred the question to her. With PFIC, the liver has a hard time secreting bile, a fluid that helps digest food, the buildup causes the problems.

After four weeks of being constantly sick at home and a four-week stay at Cincinnati’s Children’s Hospital, Randi was diagnosed. The disease is so rare that it affects only 1 in every 50,000-100,000 people worldwide.

Having PFIC, “the main problem was she would just scratch herself literally to death. That’s why she cried all the time because she couldn’t scratch,” Pam sadly recalls. Randi remembers the pain and itching. “I remember sitting on my dad’s couch picking and picking. Picking it (feet) until it bled and just keep doing it. Sometimes I used to hide it because I knew that I would get in trouble for it. I knew that I wasn’t supposed to do it but I couldn’t help it.”

At age 10 Randi received a liver transplant. “Without the transplant, she wouldn’t be here. She wouldn’t have survived the disease,” Pam says thankfully, still sighing with relief. Before her transplant, her quality of life was very poor. Pam and Randi both were relieved that after the transplant the one thing that did go away was the itching. They thought that would be the end of it.

But Randi didn’t seem to be able to catch a break.

“She’s had a lot of complications after the transplant but I wouldn’t trade it for anything. She was just one of those kids that whatever could go wrong did,” Pam says in an ironic tone. After the transplant, Randi had many atypical complications. Her small intestines stopped working, which requires her to be on an IV every night for 10 hours to get nutrition. Her body rejected the liver several times, she had infections, she initially had no energy level, and her immune system is easily compromised. “I can get sick from one single cough, sick for a whole month. Just a cold can be horrible,” Randi says.

Life has improved and things are starting to look up. This June, Pam and Randi had one of the most rewarding experiences of their lives. Joy exudes from Pam as she shares that, “We just recently went to a conference; it was the first one ever for her disease. I wish there would have been something like that years ago. I was all alone.”

Before this, they never knew anyone else who has the disease or have been able to talk to other families that were dealing with the same thing.

“I met my birthday twin y’all,” Randi shouts out in glee. “It was a place to meet people who might or might not have the same disease as you, but know what you’re going through. To be able to talk to those people and get help from them or just get to know them; the most information I ever got in my head in the whole years of having my disease was at that conference.”

“She really was an inspiration to a lot of these kids because she’s a survivor. All those kids are living that,” proud mama beams.

Excitedly Randi interrupts, “I’ve always wanted to not only learn more about my disease but also be able to help others.”

One of the supports at the conference, approached Randi and new-found PFIC friend Laura, complimenting them on sparking energy and telling them that they could be inspiring to others. She asked the dynamic duo to be on a teen panel at the conference and start a Facebook page

The two did just that, hosted a teen panel at the conference full of doctors, researchers, and affected families from around the world.

“I am really proud of her. She was a big hit. Parents could ask these teens questions to try to understand what their kid was going through. It was amazing,” Pam said.

Randi and Laura also accepted the challenge to host a Facebook page for PFIC. Randi sees it as a chat room for any questions to be asked and shared. It’s a place where input and advice are freely given and members don’t have to worry about being judged. They want to provide help to others in the way they know how, by providing resources, and tips on what helped them.

The passion pours out of Randi, “The Facebook page and the conference really opened my eyes. We can do so much more for this. It’s a rare liver disease but we can make the knowledge of it non-rare. We can let people know about it, even if they don’t have the disease. Maybe if they have a friend or they have a sibling that has it.”

“The siblings go through a lot and it’s not acknowledged,” Pam emphasizes empathetically. “She was little and I didn’t have a lot of support.” Pam was a single mom raising her children by herself.

“I think that not only do I want to make the PFIC community well known but also definitely help the siblings. [They] are going through all the challenges with them and see how they’re affected. I just want to help them understand what is going on and what might happen,” another mission emerges from Randi.

Randi’s Facebook Page brings awareness about PFIC. She would love for any kids or teens who are going through or know someone going through PFIC to join their community. The PFIC Network is a non-profit which hosts a website providing information and building awareness about PFIC as well. With resilient young people like Randi surviving and fighting back, PFIC and other rare liver diseases will become well known.