WOLFE CO., Ky. (LEX 18) — Seventh grader Cedar Ventura has what some would call an invisible illness.
"If you didn't know she had a rare liver disease, you would never know," said her father, Dario Ventura.
It's called PFIC, a rare genetic disease that affects the liver. Bile isn't able to be drained, leading to jaundice, severe itching, and ultimately liver failure.
Cedar was diagnosed at 5 months old.
"When you have answers, it's always a relief," said Dario.
At five years old, she had a complete liver transplant. Cedar said she doesn't want to be known for that.
"I just feel like people pitied me a bit more, and I feel like anytime something was wrong they would jump to that conclusion, and so I didn't really feel like I was being seen has a normal person," said Cedar.
Her father's BBQ joint called Red Point BBQ, located in Campton, is hosting a Labor Day fundraiser. They're shedding light on the disease, and the money raised will go towards research.
"Awareness goes a really long distance because we were helpless until we were made aware of what disease she had," said Dario.
The fundraiser is happening Monday starting at 9 am and lasts all day. There will be disc golf, cornhole, drinks, food, and live music.
