Nine-year-old Trevor Harris and his family know how to turn a negative into a positive.
On rainy days, they play hide-and-seek and board games. When dad has to work late and can’t get home in time for dinner, mom lets Trevor and younger sister Sable, 6, eat under the table as a fun diversion.
But last year, the Monroe family’s ability to remain upbeat was deeply tested when Trevor was diagnosed with a rare blood disorder.
Trevor's mother, DeDe Harris, had long suspected something was not right. Trevor was small for his age. He bruised easily. He took twice as long as Sable to recover from colds and stomach bugs. After Trevor developed a rash on his face for no apparent reason, Trevor underwent a series of blood tests that eventually led to the stunning diagnosis of Fanconi anemia, an inherited blood disease (both of his parents later learned they are carriers) that mainly affects the bone marrow. The condition results in decreased production of all types of blood cells.
So how did the family respond?
"When we got the diagnosis, my mom was like, 'We've got to make something fun out of this,'" Trevor recalled during a recent checkup at the Aflac Cancer and Blood Disorders Center at Children's Healthcare of Atlanta's Scottish Rite campus.
With Trevor and his father, Wade Harris, huge comic book fans, they decided to create their very own comic book. But first they needed a superhero.
To take a leap toward that, the family turned a nine-hour drive to Cincinnati Children’s Hospital Medical Center to see a specialist in Fanconi anemia into a brainstorming session.
Trevor knew his superhero needed to have superhuman strength. The superhero also required a cool backstory, he said. As the family got closer to the hospital, their superhero started taking shape: He was a police officer and also a young soldier in the National Guard who was deployed in Afghanistan. He was injured when a suicide bomber invaded his camp, and then he needed a bone marrow transplant. But after his transplant, he developed the ability to heal and fight all blood diseases.
They had their superhero — Marrow Man.
Muscular and wearing a burgundy red form-fitting top emblazoned with an orange anchor as a symbol of hope, Marrow Man has an orange mask covering his head and eyes. A poster shows Marrow Man going “Boom” “Slam” “Pow” against leukemia, lymphoma and other blood diseases.
The Harris family, who recently created a nonprofit called Marrow Man Inc., said they wanted to create the comic books as a way to provide support to other children with blood diseases. They also hope their comic book (which they give away for free) raises awareness about blood diseases and encourages people to sign up to become bone marrow donors at BeTheMatch.org.
The project has helped the family grapple with the seriousness of the situation.
“I told him, ‘I will tell you when to be afraid.’ I didn’t want there to be fear in my face,” said DeDe Harris. “There were days I would wake up with my knees shaking. I knew I couldn’t live this way. I am a doer.”
In February, with the help of students from Savannah College of Art and Design, they released their first comic book, "Magnificent Marrow Man Versus Fanconi Anemia." To order a comic book, go to www.marrowman.org.
Since no one in Trevor's family was a match for Trevor, the family had to turn to the National Marrow Donor Program. Trevor had three matches — out of almost 25 million potential donors.
In June, Trevor returned to Cincinnati Children’s Hospital for a bone marrow transplant during a 100-day hospital stay.
While there, he met other children with Fanconi anemia. (It’s extremely rare: There are only about 31 babies born in the United States each year with this disease.) Trevor was happy to give kids his comic book. It introduces readers to Marrow Man, who is on a mission to protect young people and find a cure.
While there is no cure for Fanconi anemia, bone marrow failure can be treated with a bone marrow transplant. All indications are that Trevor has responded well to his transplant with his new bone marrow making plenty of blood cells, according to Dr. Katie Sutton, a pediatric hematology/oncology fellow at the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta. She also said he has experienced no significant complications.
Trevor will continue to make trips to Scottish Rite every other week for continued monitoring.
“He is feeling good … and we are delighted with his progress,” Sutton said in an email.
During a recent doctor’s appointment at Children’s, Trevor, dressed in a red Marrow Man T-shirt, said he has turned to guided imagery, letting his mind drift to taking walks in a forest, to help him cope. He said “big belly breaths” also help. He wants to eventually run the family’s Marrow Man organization, a nonprofit he hopes will someday make movies and support kids like him, he said.
The best part of the comic books, he said, was the reaction of children receiving the books.
“I like to put a smile on kids’ faces,” he said.
