For most seven-year-olds, beating an older brother in a race might seem like an ordinary victory. For Levi Johnson and his family, it meant something much more.
For years, Levi’s older brother, Bryson, easily won their races. But recently, as the brothers raced down a staircase after leaving the hospital, Levi won for the first time.
The milestone came after a life-changing summer for the Acworth second grader. After living with sickle cell disease since birth, Levi received a bone marrow transplant in May. He has spent the months since recovering with his family, thanks to Ronald McDonald House Atlanta.
“We’re still adjusting in real time, but we’re just glad to be on the other side of it,” said Brandon Johnson, Levi’s dad.
Levi tested positive for sickle cell disease at birth.
The inherited blood disorder affects red blood cells, causing them to become rigid and form a crescent, or sickle, shape. These cells can restrict blood flow and contribute to serious health complications.
For Levi, the disease meant painful crises, fatigue and less stamina than many children his age.
His mother, Jillian Johnson, is a nurse practitioner who has seen the impact sickle cell disease can have on patients as they grow older.
“I work with a lot of adults who have sickle cell disease, so I’ve seen the complications they have with each individual,” Jillian said.
When Levi was just one year old, his parents noticed he was unusually fatigued. He was experiencing splenic sequestration, a serious complication in which blood becomes trapped in the spleen.
The family rushed him from Acworth to Children’s Healthcare of Atlanta, where he received a blood transfusion. Levi needed additional monthly transfusions, and his spleen was eventually removed.
“It’s stressful because with sickle cell disease, anything could happen at any time,” Jillian said. “You’re walking on eggshells.”
Last year, the family learned that a bone marrow transplant could offer Levi the possibility of a life beyond sickle cell disease.
Levi was eligible for the treatment, but the family needed a matching donor.
Then came remarkable news: his eight-year-old brother, Bryson, was a match.
Jillian initially worried about how difficult the transplant and recovery might be for Levi. But the possibility of curing his disease was too important to pass up.
The family moved forward, and Bryson stepped up to help his younger brother.
“For an eight-year-old, as a parent outside looking in, he was very brave about the situation,” Jillian said.
Levi received the transplant on May 26 and remained at Children’s Healthcare of Atlanta for weeks as his medical team monitored his recovery.
Recovery brought another challenge: separation.
While Levi remained in the hospital, Bryson stayed at the family’s Acworth home. Jillian primarily stayed with Bryson while Brandon spent much of his time with Levi. The brothers could only see each other through FaceTime.
That changed on June 19, when the family moved into Ronald McDonald House Atlanta, allowing them to reunite while keeping Levi close to the hospital.
Because Levi was immunocompromised following his transplant, the Johnsons stayed in one of Ronald McDonald House Atlanta’s transplant suites, designed to help protect medically vulnerable patients. Their space includes kitchen and laundry facilities that reduce families’ need to use common areas.
For Levi and Bryson, being together again meant they could get back to doing what brothers do best: playing, exploring and racing one another.
“They play together and do what brothers do at this age,” Jillian said. “It was very helpful and convenient to reestablish normalcy again.”
September is Sickle Cell Awareness Month, and we’re grateful to provide support to families such as Levi’s so that children and their families can heal together.
Your donation means families are able to stay close during their healthcare journey.
