Small boy, big cause

Joey Benton, father of 7-year-old Joey 'Peanut' Benton (right), talks to one of Peanut's doctors, Isabel Virella-Lowell, on Wednesday. Peanut, who has cystic fibrosis, will go with his father to Washington on Monday to talk to lawmakers about health care

Watch out cold, calculating Washington, D.C. -- Joey "Peanut" Benton is coming to town and he's guaranteed to melt your hearts.

Next week, the 7-year-old Summerville boy, who has cystic fibrosis, will be visiting politicians, namely members from the South Carolina delegation, on behalf of the Medical University of South Carolina Children's Hospital to thank them for national health care reforms and to draw attention to other issues.

As part of the National Association of Children's Hospital's annual Family Advocacy Day, the Benton family will join other families representing 30 hospitals to put faces on issues affecting pediatric care. Among those issues are potential cuts in state Medicaid, under-funding physician training programs at children's hospitals and supplemental funding that offsets losses at children's hospitals.

"I'm going to tell Congress about the children's hospital and how kids depend on children's hospitals," said Benton, in a room with his father, his doctor and two MUSC representatives following a doctor's visit at the hospital on Wednesday morning.

Cute, articulate, technologically- savvy, funny and mature beyond his years, Benton is becoming a local media darling. He has appeared in print, on radio and TV, and on billboards promoting a state license plate that raises money and awareness for MUSC's children's hospital. He is particularly passionate about raising awareness and funds for cystic fibrosis, or "CF."

Cystic fibrosis is a common hereditary disease which affects the entire body, causing progressive disability and often early death. Common symptoms include difficulty breathing, lung and sinus problems, poor growth and diarrhea. Most people with cystic fibrosis die at a young age from lung failure.

"I want to tell people about CF so they'll understand what it's like to have," said Benton, who didn't skip a beat in between croupy coughing spells, "and they'll want to donate more money and help the scientist (try to find a cure)."

His father, Joey Benton, says Peanut has always been good about doing his daily therapy and that he leads an otherwise active life of a young boy and has always been interested in helping others.

"Even at two years old, when he could talk, he decided his job was to help other people," said Benton.

One of his doctors at MUSC, pediatric pulmonologist Isabel Virella-Lowell, exemplifies what health care providers want from their patients with cystic fibrosis.

"We want them to have normal lives and to be active," said Virella-Lowell. "It's very important for them to exercise and to participate in sports when they get older. All of those things help lung function and keep them healthy."

And yet, cystic fibrosis can be financially devastating to a family as well. Drugs can tally upwards to $6,000 to $8,000 a month. A vest used on a daily basis to work different parts of the lungs to break up mucous, thereby preventing infection, costs $15,000.

Recent health care reforms, Benton said, has provided much needed assurances to families with children suffering from cystic fibrosis, namely eliminating insurance caps on chronic diseases, rejection for coverage due to pre-existing conditions and extending coverage on parental policies until a child reaches age 26.

When the younger Benton was asked what he was most excited about regarding his trip, he was honest: "I'm most excited about seeing my cousins. I've never seen some of them -- other than in pictures."