Going to D.C. for ill children

Matthew Chase spends his time like many other 8-year-old boys: drawing, bowling, reading or just "chilling out."

But Matthew is not like most boys. The North Charleston youth was born with hypoplastic left heart syndrome, a congenital heart defect, meaning only his right two heart chambers formed.

Matthew, who underwent three open-heart surgeries by age 3 at the Medical University of South Carolina Children's Hospital, will represent MUSC this week when he goes to Washington for the 2009 National Association of Children's Hospitals Family Advocacy Day. Representatives will meet with their state's legislators to push for affordable health insurance coverage and specialized, quality care.

"It would have been devastating for us to pay those bills," Christine Chase, Matthew's mother, said of his $1 million-plus in surgery bills. "No parent should have to be concerned with cost when their child is in danger of losing his life."

Dr. Varsha Bandisode, Matthew's cardiologist, said pediatricians think that children are left out of the health care discussion.

With nearly 9 million children lacking health coverage in the United States, Bandisode said, if Matthew simply raises awareness that children need help, eventually legislation could shift toward those needs.

"Most people think of heart disease as an adult disease process. It's good for people to see children who have had to go through so much more as children than some people do throughout the span of their lives," Bandisode said.

MUSC Children's Hospital is the nation's 19th best children's hospital for heart surgery, according to a U.S. News and World Report. It is the only pediatric cardiology department in the state and served kids from 49 states last year.

Bandisode said that while Matthew is doing fine without a transplant, he might need one in the future.

Matthew said he aspires to be an astronaut, preacher, teacher, pumpkin king and astronomer. He's also a fundraiser in his own right.

"I decided: Why don't we do a fundraiser for the other children at MUSC hospital so they can live?" Matthew said of the more than $3,000 he raised last February from his fellow students' donations, which he gave to MUSC Children's Hospital.

"I just thought about the other kids here."