Acworth second grader recovers from life-saving sickle cell treatment

An Acworth second grader is on the road to recovery after receiving a life-saving bone marrow transplant to help treat sickle cell disease. Levi Johnson, 7, underwent the transplant on May 26 and has spent the last two months recovering with his parents at Ronald McDonald House Atlanta and Children’s Healthcare of Atlanta.

As he prepares to return home and adjust to life beyond sickle cell disease, his parents said they are impressed by his progress and are optimistic for his future. “We’re still adjusting in real time, but we’re just glad to be on the other side of it,” said Brandon Johnson, Levi Johnson’s father. Johnson has lived his entire life with sickle cell disease Levi Johnson has struggled with sickle cell disease since he was born, his parents said. In people with sickle cell disease, red blood cells become rigid and deformed into a crescent or sickle shape, according to the Centers for Disease Control and Prevention. These deformed blood cells die early and often become lodged in small blood cells, restricting blood flow and causing serious health problems throughout the body. Complications include anemia, acute and chronic pain, infections, pneumonia, stroke and kidney, liver and heart disease, according to the CDC. The estimated life expectancy for those with sickle cell disease in the U.S. is more than 20 years shorter than the national average.

Jillian Johnson, Levi Johnson’s mother, said her son tested positive for sickle cell disease at birth. Herself a nurse practitioner, Jillian Johnson said she’s seen how sickle cell disease impacts people at various ages, and worried about her son’s ability to have a comfortable and healthy life with the condition. “I work with a lot of adults who have sickle cell, so I’ve seen the complications they have with each individual,” Jillian Johnson said. She described the months following Levi Johnson’s birth – usually a time for joy and bonding between parents and babies – as a “whirlwind.” The Johnsons were immediately brought to Children’s Healthcare of Atlanta to start managing the disease. Levi Johnson experienced pain crises, sudden and severe pain in the bone and joints caused by sickle-shaped cells getting stuck in small blood vessels around the body. He was often fatigued, and didn’t have as much energy and stamina as the children around him.

“With Levi, his first year of life was different,” Jillian Johnson said. On his first birthday, Jillian and Brandon Johnson said they noticed Levi Johnson was more fatigued than usual. It turned out that he was struggling with splenic sequestration, a life-threatening emergency where blood becomes trapped in the spleen. The Johnsons rushed Levi from Acworth to Children’s Healthcare of Atlanta. Doctors were able to fix the issue with a blood transfusion, but to keep it from happening again, Levi and his parents had to drive to the hospital from Acworth each month for subsequent transfusions. Levi Johnson’s spleen was eventually removed about a year after the incident. “It’s stressful because with sickle cell, anything could happen at any time,” Jillian Johnson said. “You’re on eggshells.” A bone marrow transplant saved Levi’s life

Hope emerged for the family last year when a doctor recommended Jillian and Brandon Johnson explore the possibility of a bone marrow transplant for Levi. Bone marrow transplants can cure sickle cell disease, but they aren’t feasible for all patients. The Johnsons found out Levi would be a candidate for the treatment and – in a fortuitous turn of events – that Levi’s 8-year-old brother, Bryson Johnson, was a match. Jillian Johnson said that she was hesitant at first, worrying that the recovery process would be hard on Levi. The prospect of potentially curing the disease, though, was too good to pass up, and the family went ahead with the transplant. Brandon and Jillian Johnson said they were proud of Bryson for helping his brother, and for his bravery throughout the testing and donation process. “For an 8-year-old, as a parent outside looking in, he was very brave about the situation,” Jillian Johnson said. Levi Johnson received the transplant on May 26 at Children’s Healthcare of Atlanta. He had to stay in the hospital for weeks after the surgery so doctors and nurses could monitor his recovery.

The adjustment wasn’t easy. While Levi was stuck in the hospital, Bryson had to stay in Acworth and could only talk to his brother through FaceTime. Jillian Johnson stayed primarily with Bryson at their home while Brandon spent much of his time at the hospital with Levi. The brothers were reunited on June 19, when the family moved into Ronald McDonald House Atlanta to keep Levi Johnson near the hospital while he finished his recovery. The Johnsons have been staying in a room designed especially for people who are immunocompromised following transplants. It includes kitchen and laundry spaces to help the family avoid common areas where germs could spread, and an air filtration system that gets rid of harmful particles, said Tracey Atwater, president and CEO of Ronald McDonald House Atlanta. During their time at Ronald McDonald House Atlanta, Levi and Bryson Johnson have enjoyed running the halls together and playing on the large wooden plane on the building’s fifth floor, their parents said.

“They play together and do what brothers do at this age,” Jillian Johnson said. “It was very helpful and convenient to reestablish almost like a normalcy again.” Levi Johnson has continued to improve over the last two months, and his parents are starting to look forward to a day when he can have a healthy, happy life. Brandon Johnson said Levi and Bryson love to race each other down a staircase leading out of the hospital. Prior to the transplant, Bryson always won handily. The boys raced each other recently, though, and Levi beat his brother for the first time. “It’s not easy, but it’s like, ‘Okay, I see you, little man,'” Brandon Johnson said. “He definitely is working towards his stamina and just health.” Levi Johnson recently entered second grade, too. While he is doing school remotely from Ronald McDonald House Atlanta due to his recovery, his parents said once he finishes he will be able to re-integrate into in-person schooling and activities. The Johnsons said they are already thinking about what clubs and sports he will be involved in, and Levi Johnson said he plans on riding roller coasters at Disney World when he’s recovered.

His parents said they are optimistic about his future, and hope his story can inspire families going through similar ordeals. “There’s light at the end of the tunnel,” Brandon Johnson said. “It may seem hopeless sometimes, but this hopefully can be hope to somebody.”