Ever since Dominick Bibbs, 21, was a baby, he has experienced debilitating sickle cell disease symptoms, which affected his ability to go to school, play with his friends and enjoy an active childhood. After years of pain crises and life-threatening complications, Dominick’s life changed when he received gene editing therapy with Dr. Michael Eckrich, a pediatric hematologist/oncologist at Atrium Health Levine Children’s Cancer & Blood Disorders.
Dominick’s journey with sickle cell disease
Dominick was diagnosed with sickle cell disease when he was 3 months old. Sickle cell disease is an inherited condition that causes red blood cells to become sickle-shaped, which can block blood flow and deplete healthy red blood cells. Many people with sickle cell disease experience complications like organ failure and a shorter life expectancy.
His mother, Nicole, says both she and his father have sickle cell trait. People with sickle cell trait usually don’t have sickle cell disease symptoms, but they can pass the genes on to their children.
“When Dominick was younger, his symptoms were manageable, but once he started middle school, they got progressively worse,” says Nicole.
The condition caused a constellation of problems throughout Dominick’s childhood: emergency spleen removal surgery when he was 4 years old, gallbladder removal surgery in 6th grade and a port infection that nearly led to sepsis when he was in high school.
“All throughout my childhood, I played football,” says Dominick. “One day, I went for a checkup and was told I had to stop playing because my heart was enlarged. I had to stop playing sports entirely and couldn’t even go swimming with my friends if it was too cold. All of this took away from me hanging out with my friends.”
As Dominick got older and his symptoms worsened, he became homebound, and his teachers came to his house to teach him since he couldn’t attend school. Nicole says his friendship group also dwindled during this time, though he was still able to graduate with his class in 2020.
Starting the gene editing therapy
In 2018, Dominick and his family learned about gene editing therapy from a clinical trial Eckrich led in Dominick’s hometown of San Antonio, Texas. After completing paperwork, turning 18 and dealing with pandemic-related delays, he received his gene edited therapy in 2021.
Before gene editing therapy, Dominick was experiencing frequent pain crises (a common complication of sickle cell disease) and was on multiple opioids for pain management. He wondered if he would survive much longer.
Gene editing uses CRISPR/Cas9 to turn on the production of fetal hemoglobin in the red blood cells of sickle cell disease patients after transplant. This gives them the same type of protection they experienced in the womb.
“Patients normally lose this protection at 9 months of age when they begin to express normal sickle hemoglobin, which, for sickle cell patients, causes red blood cell problems that lead to sickling and pain, among other serious life-threatening complications,” says Eckrich. “Using CRISPR/Cas9, we are able to actually fix a disease that otherwise was not fixable.”
In most transplants for sickle cell disease, there is a complication called graft-versus-host disease (GvHD), where the donor cells attack the recipient’s body. Eckrich says GvHD is often more debilitating than sickle cell disease itself.
“We don't want to exchange a chronic disease for another chronic disease,” says Eckrich. “And when you give a patient’s own stem cells and immune cells back to them during transplant, there is no risk of GvHD. As transplant physicians, we appreciate lowering the transplant risks for our patients. In some malignant conditions, GvHD may have benefits, but in sickle cell there is no benefit to GvHD, thus an ideal transplant would eliminate the possibility of GvHD."
He adds, "another theoretical benefit, is that unlike other sickle cell treatments, once successfully complete, patients should not need medicines on a daily basis to control their pain or treat their sickle cell," adds Eckrich.
Dominick’s results
The whole process took about six months and while it was challenging, Dominick says it was worth it: His results from the therapy have been life-changing.
“I don’t think I’d be alive if I hadn’t done this gene editing therapy,” he says. “I started feeling better six months after the treatment and was able to go to college.”
Dominick no longer takes any medication; before he began therapy, he was on 10 pills a day.
“He hasn’t been to the emergency department in two years,” says Nicole. “Before he started the therapy, we were in the ER once a week. He’s able to be a normal young adult.”
When Eckrich transferred to Levine Children’s in Charlotte, Dominick followed him to continue his care. He travels to North Carolina every three months to meet with Eckrich for ongoing follow-up care.
“Gene editing has moved sickle cell disease off the first page of Dominick’s life story so he can pursue his dreams,” says Eckrich. “He’s not stuck in emergency rooms or doctor’s offices all the time.”
Dominick’s dream of helping others with sickle cell disease
Now, Dominick is using his experience to help others. He’s working toward his nursing degree at Prairie View A&M University and plans to become a pediatric hematology nurse. In fact, he recently passed his nursing entrance exam with a supportive nursing GPA of 3.89.
“I want to give back,” he says. “I’ll be able to relate to sickle cell patients. All the nurses I’ve had throughout my life have inspired me — I’ve had some really good ones.”
He’s also traveling and spending more time with the people he loves. He just returned from a cruise to Costa Maya and Cozumel and has visited loved ones in Germany and Colorado.
“My sister lives in Colorado and I got to be in the snow without any pain,” he says. “I would have never been able to do that previously.”
“It’s been life-changing for him and for us too,” says Nicole. “All we can do is thank God every day for this miracle. I’m beyond proud of him for his nobleness in what he hopes to do in the future.”
Learn more about the sickle cell disease care offered at Atrium Health Levine Children’s.
