Event today to educate about child liver disease

Rolonda Chambers starts to explain her frustrations with her son's liver disease but stops and asks the 11-year old boy, Hunter, what he thinks.

"It might be like two months that I might be doing excellent and my blood work will be like super good," he says. "I might be doing things - going to basketball and doing things with my friends. And then, when it comes to my blood work (again), it just, "

He picks up his hand and drops it to the table.

"Fffoom."

Though Hunter has almost died from the disease, the Chambers family said hope is the reason they've started a nonprofit for Northern Nevada children and their families dealing with liver disease. Saturday at Davis Creek State Park, Hunter's Tree of Hope has its first pediatric liver awareness picnic and blood drive.

The Chambers family said people can be both realistic and positive.

Through Hunter's experience - surgeries, medicine, waiting lists and long weeks at the hospital - the Chambers family said one of the ways they've stayed hopeful is through humor.

Hunter said he and other patients would sometimes put on oversized glasses and fake noses while lying in their hospital beds.

"We'd sit there and when the nurses would come in we'd have our honkers out and go 'nerrrrr.' And they couldn't take us seriously."

When his parents were with him, they tried to have as much fun as they could, and when they had to cry, they'd leave the room.

Though they didn't know many other people with Hunter's disease living in their hometown of Sparks, they saw how much support could help when they got to know Carson City-resident Vic Clementi, who is helping organize the event.

In 2003, Clementi almost died from the disease, before getting an organ transplant. He said now he's just trying to help where he can.

While Clementi had a different type of liver disease than Hunter does, he said he knows how serious the disease can be. The condition that most children like Hunter are born with is called biliary atresia, which causes bile to back up and scar the liver.

Hunter, his mother said, likes being able to have someone older who knows what's he's going through.

"Sometimes people will treat me differently," Hunter said. "Sometimes they'll be freaked out. They'll look at me and think of me as special and they won't really understand. Sometimes they're like, 'Does it affect your memory?' And I say, 'No, it has nothing to do with that.'"

Hunter is on a waiting list for a liver transplant.

• Contact reporter Dave Frank at dfrank@nevadaappeal.com or 881-1212.

If you go

WHAT: A pediatric liver awareness picnic and blood drive organized by the Northern Nevada nonprofit group Hunter's Tree of Hope

WHEN: 11 a.m.-4 p.m. today

WHERE: Davis Creek Park, Washoe Valley

MORE INFO: www.hunterstreeofhope.com

DONATEBLOOD: Call 354-0274 or go to www.bloodhero.com and use the code HTOH