Miracle boys visit Capitol Hill on
behalf of MUSC Children's Hospital
Heart
transplant survivor Joseph “JoJo” Greenwood and burn survivor Duane
Jenkins and their families visited Washington, D.C., to lobby on behalf
of children’s hospitals with South Carolina Reps. James Clyburn (D),
Henry Brown (R), and Sens. Lindsey Graham (R) and Jim DeMint (R). 
Reps. Jim Clyburn,
left, and Henry Brown talk with Angela Greenwood June 21 in Washington
D.C.The boys, their families and a team representing MUSC were part of the National Association of Children’s Hospital’s Family Advocacy Day that took place June 21.
Just two months ago, JoJo, 6, nearly died before MUSC Children’s Hospital received a compassionate-use waiver from the Food and Drug Administration (FDA) for a special device called the Berlin Heart, which kept him alive until he received a new donor heart two weeks later. Without the medical expertise of MUSC Children’s Hospital and its ability to work with the FDA for special permission, JoJo probably would not be alive today.
“I’m very proud of you,” Graham told JoJo. “You’re a good man.”
Asked whether he was feeling better, JoJo nodded and, pointing to his chest, said “Because I have a new heart.”
Graham’s office arranged a meeting with the FDA legislative representative for JoJo’s mother, Angela. Along with Angela and JoJo, were Sonja Muckenfuss, R.N., director of nursing; Kathleen Ellis, director of national media in marketing; and Pat Votava, R.N., manager of the Medically Fragile Children’s Program who attended the meeting. Jeremy Ringewald, M.D., pediatric cardiologist, participated via conference call.
JoJo gave the FDA staff member a mini-photo album documenting his ordeal titled, “From Tee Ball to Transplant.” His mother thanked the FDA for its compassionate use waiver for the Berlin Heart and advocated for the FDA approval of the device to help keep other children alive while awaiting a heart transplant.
“I really want FDA commissioners to make it a priority, because there is going to be another child down the road who needs it,” Greenwood said.
The FDA legislative-affairs representative suggested they return to Washington to testify before an FDA panel probing the efficacy of the heart pump.
Meanwhile, Graham and DeMint promised to pursue approval of the Berlin Heart with the FDA.
When he was 13 months old, Duane Jenkins suffered burns to more than 85 percent of his body when his family’s home went up in flames. He was discovered by firefighters, who stumbled over him in the smoke-filled house, and rushed to MUSC Children’s Hospital. MUSC Children’s Hospital has the only pediatric burn unit in the state. The MUSC pediatric burn team treated Duane throughout the following year. Since then, he has undergone more than 40 surgeries, and lost his nose, ears and hands as a result of the severe burns. But today, Duane is 12 years old, and goes to a mainstream school where he is able to communicate using a picture board.
“Although Charleston has suffered a terrible loss of the nine firemen, here you are as a testimony to lives that have been saved by firefighters and MUSC Children’s Hospital,” said Clyburn.
“We are among the best children’s hospitals in the country and I want everyone to know that,” said Duane’s mother, Donna Jenkins, head of the Children’s Hospital Family Advisory Council. “This visit to Capitol Hill with Duane and JoJo has reminded me that everyone has a voice and can be an advocate for our children’s health care.”
Friday, July 20, 2007
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