Health Care Heroes win the day with heartwarming stories

With story after heartwarming story, the night aptly ended with a Health Care Hero award going to 9-year-old Gabe Johnson.

Gabe, decked out in a suit jacket, fished out an index card to read his remarks at the 12th annual Charleston Regional Business Journal’s Health Care Heroes event. The awards honor those who have a passion for health care and compassion for patients.

Gabe was singled out for the way he reached out to other children when he was at the Medical University of South Carolina Children’s Hospital for five weeks for complications from a ruptured appendix. As sick as he was, he focused his attention on other, even sicker, children.

When he got home, Gabe started a "Go Fund Me" page and raised $2,000 on behalf of children at MUSC. Then he went to Congress to advocate for legislation that would free Medicaid funds for children who must cross state lines to seek medical attention. 

Dean Stephens, emcee for the event and an ABC News 4 anchor, explained that as a direct result of Gabe's advocacy, nearly all the members of the South Carolina congressional delegation are cosponsors of the Advancing Care for Exceptional Kids Act, and Gabe’s efforts will make a difference in the lives of millions of children throughout the nation.

Gabe said he was scared when he was in the hospital. “But the people at MUSC helped me. I wanted to give back and help kids who were more sick than I was. I hope to keep volunteering at MUSC and am honored to receive this award tonight. I also want to thank my parents and the nurses who were always at my side when I needed them.”

Patrick J. Cawley, chief executive officer of MUSC Health, said the best part of his job is coming to events like this. “Think about all the change that’s happening in health care,” he said. “We’ve never seen so much change. But despite all that, we’re in the people business.”

He congratulated all the honorees at the banquet. MUSC had several nominees, including researchers Jacqueline Kraveka, DO, and Patrick Flume, M.D.; nurses Katie Kohler and Erin Wilkinson; sickle cell specialist Julie Kanter, M.D.; and volunteer Kathy Sykes with her dog, Bristol.

“Everyone here who has been nominated has been working hard for a number of years and has awed people around you,” Cawley said. “I’m going to selfishly ride a wave of good feeling out of here because you’ve brought me there. I want to thank you for being great, great people repeatedly over time to the point that you’ve touched people around you.”

Gabe wasn’t the only Health Care Hero with MUSC ties. Kraveka and Wilkinson were also named Heroes.

Kraveka, a pediatric oncologist, is responsible for conducting more than 50 clinical trials at MUSC. She also serves on a neuroblastoma consortium that is working on a drug that shows promise in increasing survival rates for neuroblastoma and developing novel treatments for this deadly disease.

Kraveka said she feels very fortunate to work at the MUSC Children’s Hospital. “People go above and beyond to go out of their way to help the kids. I feel privileged and honored to be part of that. I want to bring awareness to childhood cancer. A lot of people think adults get cancer, children do not. But unfortunately, death from cancer is a leading cause of death from disease.”

Cancer causes more deaths than AIDS, cystic fibrosis, asthma and diabetes combined, Kraveka said, yet only 4 percent of federal cancer research funding goes to childhood cancers.

She likes to raise awareness about neuroblastoma, a pediatric tumor that many people have never heard of. When she was a medical student, the survival rate was 30 percent. That has risen 50 to 60 percent. “We definitely have to do better. We just need to lobby Congress to increase funding for childhood cancer research because it’s so crucial.”

That was the rallying cry of Flume and Kanter for their specialty areas as well.

Flume, who is one of the leading clinicians and researchers in the field of cystic fibrosis, was honored for how his work has led to improving the management of cystic fibrosis and increasing the life expectancy of patients.  His work as a researcher also has been critical to successful clinical trials in other diseases, such as idiopathic pulmonary fibrosis. 

Flume said he came to Charleston almost 25 years ago to set up the adult cystic fibrosis center. “It was a privileged time to be in the field of CF because we went from no therapies to multiple therapies and the average age has increased from 23 to 41 years of age. We don’t have a cure but we’re on the cusp of something really special.”

He thanked the volunteers who participate in clinical trials, saying their efforts help researchers advance medicine.

That was echoed by Kanter, described as “wonder woman” by some of her patients because of her drive to find better treatments for sickle cell disease. When she came to MUSC Children’s Hospital in 2013, there was no coordinated system of care for people with the painful and debilitating disease. She received a $4 million grant to establish a statewide network to increase access to quality care.

She has also developed a quick, accurate and inexpensive test for sickle cell disease, which can enable millions of children worldwide to be screened.

“I believe we have the ability to significantly improve outcomes,” Kanter said. “It’s the most common inherited blood disorder in the United States and yet is often unnoticed, and when noticed, it unfortunately is often stigmatized.”

It’s stigmatized in part because others can’t see the source of sickle cell patients’ pain. “Those of us who treat the disease understand that this is something that can’t be measured except by the patients who unfortunately have to suffer from it,” Kanter said. “We’re lucky. About 30 years ago, people didn’t live beyond the age of 5 years old. Now we are lucky to say the surviving age greater than18 is more than 99 percent.  But we have to do better. Our patients have to live longer and stronger.”

Wilkinson, who was winner of the Hero designation in the nurse category, was nominated for her compassionate care. There was one particularly challenging patient at MUSC whose degenerative, debilitating disease caused great pain and prevented him from communicating his needs. His condition worsened to near death.

Stephens described Wilkinson’s response to that patient as the news anchor announced her award. “Erin saw a sparkle in his eyes and befriended him, holding his hand and going the extra mile to ease his hardship. When she found out he liked chocolate ice cream, she ordered him milkshakes. She took him outside into the fresh air. She bought him his favorite name-brand coffee. Slowly his condition improved.”

When the patient was discharged, he kissed Erin on the cheek and told her he loved her.

Wilkinson, who teared up when accepting the award, said: “I just appreciate the honor – my group, my hospital, being able to serve the people in our community – all of you. Thank you very much.”

That was the repeated theme from all the honored health care professionals. At the end of the day, it all comes down to reaching out to others, they said.

Sykes, who came on stage with her festively bedecked spaniel mix Bristol, said she sees firsthand what a difference reaching out to patients can make. 

She loves taking Bristol, who will wave, shake and high- five, around to visit patients. “I never expected to get an award for something that I enjoy so much,” she said, adding that Bristol is always excited to come to the hospital. “She runs to the door. She has an amazing ability to show love to patients, especially children.”

So does Sykes. 

“Nothing makes me happier than to go into a room where a child is either in pain or just having a really bad day, and for the parents to tell me it’s the first time they’ve seen their child smile all day. There’s nothing better.”

She feels blessed to have met so many courageous children. 

“Unfortunately, the hardest part is that some of them are not here anymore. I will never forget the impressions that they have made on my life. I really believe the true health care heroes are the children and families in the hospital who are fighting these diseases.”