Rantin: Puppets’ cheer pushes away sickle-cell fear

Kennedy Bacon understands her disease a little better now. And her prospects of living with it are a little less frightening.

Since she was born, the 7-year-old Horrell Hill Elementary School student has braved the aches, dehydration and fatigue that often accompany a diagnosis of sickle-cell disease. But a new video is offering her family and others a child-friendly tool to help cope with the illness.

“I might be little, but I’m strong,” Kennedy said, sharing a motto she developed after viewing the DVD, “When Cousin Zetta Comes to Visit: A Sickle Cell Story.”

The DVD was produced by The Auntie Karen Foundation — a South Carolina-based global charity — along with Palmetto Health Children’s Hospital and ETV. The 10-minute video uses puppets and music to help explain the disease.

Kennedy joined other pediatric sickle-cell patients and their families for a screening of the DVD last week at Children’s Hospital.

For her and the others, it reinforced some important lessons about sickle cell while reminding the youngsters of things they have in common with other children.

“I learned that I need lots of water,” Kennedy said. “And when I play at recess, I need to take a break and stuff. But I’m happy because I still get to play around (like everyone else).”

Sickle-cell disease occurs predominantly in the African-American community and affects about 1 in 400 children. The genetic disorder affects the hemoglobin portion of the blood.

A patient with the disease can have severe pain in any part of the body. Patients also are at a greater risk for severe strokes, which sometimes can be fatal.

Kennedy’s mother, Bernadette Bacon, said the video has given her and her husband, Shelton Bacon, another avenue for explaining the disease to Kennedy — and their other two children, 12-year-old Jaylen and 8-year-old Myia.

“It helps them know that they don’t have to treat her any differently, but just to take certain precautions,” she said.

Such precautions include ensuring that Kennedy gets lots of fluids, proper rest and the necessary medication to manage her pain and other side effects.

Bacon added the video had taken much fear out of the disease. “It just kind of laid out things for us to do,” she said. “We’ve been working with (Kennedy), and she understands it. She’s not scared to go into the hospital.”

Providing that kind of assurance was a major motivation in the creation of the DVD.

“Most of what was out there was geared toward adults,” said Karen Alexander of The Auntie Karen Foundation. “We have created a child-friendly DVD with jazz music that weaves the message with the help of our puppet characters, the Jamaican Yams Family.”

The Auntie Karen Foundation received a grant from the Ronald McDonald House Charities of Columbia and the S.C. Competitive Grants program to fund the project. The DVD has been given to sickle-cell clinics throughout the state and also is available at no charge online for classroom teachers through ETV’s Streamline program.

Individual copies of the DVD are $5 and can be purchased by calling The Auntie Karen Foundation at (803) 748-7124.