Ryan Dodson, 18, was diagnosed with sickle cell disease soon after he was born. His mom, Kim, has beta thalassemia, a blood disorder that decreases hemoglobin production, so Ryan was tested for sickle cell disease at birth.
Sickle cell disease is a genetic condition where red blood cells become sickle-shaped, depleting healthy red blood cells and blocking blood flow. The condition can cause episodes of severe pain (pain crises), complications like organ failure and deceased life expectancy.
Ryan’s childhood with sickle cell disease
“Ryan has had a tough run with sickle cell disease,” says Kim.
Soon after turning one and taking his first steps, Ryan began facing a lot of challenges. He had to have his spleen removed and was facing excruciating pain at a young age. These pain crises usually started with leg pain, and he would sometimes pass out.
Despite it all, Ryan did well in school. But as he got older, his pain increased.
“By the time he got to middle school, he’d missed 100-plus days of school,” says Kim.
Ryan started online schooling just before the COVID-19 pandemic began.
“He did well, but then was sleepy from the pain medications or being up all night in pain,” she says. “Ultimately, we took him out of school to help keep him healthy.”
Finding the right care team for Ryan
Like many families with a child who has sickle cell disease, the Dodsons were familiar with the emergency department and numerous doctor’s offices.
“A lot of people didn’t believe how much he was hurting,” says Kim. “It was rough, hopping from hospital to hospital, begging and trying to find someone who would help, who would listen and help us figure this out.”
When Kim felt like Ryan’s physicians at other facilities didn’t take his symptoms seriously, she took him to Atrium Health Levine Children’s Brenner Children’s Hospital in Winston-Salem, NC, where Dr. Alex George, a pediatric hematologist/oncologist, and Deborah Boger, a pediatric hematology/oncology nurse practitioner, oversaw his care.
“Dr. George and Debbie sifted through everything and took the time to figure out how to help Ryan with his pain,” says Kim. “They cared. They wanted to help. They wanted to find a solution.”
As Ryan got older, his pain increased.
“Recently, Ryan told me that sometimes he was hurting more than he said because he didn’t want to go to the hospital again,” she says.
A new sickle cell disease clinical trial
Then, Ryan’s medical team told him about a new gene-editing clinical trial at Atrium Health Levine Children’s Hospital in Charlotte – part of the same health system where he was already receiving his care. Levine Children’s Hospital is one of only a few sites in the nation offering this curative therapy option, so it was a bonus that it was still close to his home.
“I was nervous about the clinical trial, but I read up on it,” says Kim. “After reading the success stories, I thought, ‘This may be what we’ve been looking for.’”
“Ryan’s sickle cell disease was destroying his bones, and he had been debilitated,” says Dr. Michael Eckrich, a cellular therapy physician at Atrium Health Levine Children’s in Charlotte. “It’s been a long journey with many ups and downs, as one-time therapies are hard roads for patients with sickle cell.”
The clinical trial was a one-time treatment where Ryan donated his own stem cells, then received a high dose of chemotherapy. After chemotherapy, he received his gene edited cells back.
Gene editing uses advanced technology called CRISPR/Cas9 to turn on the production of fetal hemoglobin in the red blood cells of sickle cell disease patients. Once these cells are transplanted back into the body, the patient has the same type of protection they experienced in-utero.
“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.”
“Another potential 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.
While Ryan is still in recovery from the gene editing treatment, his mom says he’s making progress.
“I can hear the hopefulness in his voice,” says Kim. “He doesn’t have much pain, just a little bit of chronic pain in his leg where it used to hurt all the time. He’s been walking around the hospital with the physical therapists every day. Before, he couldn’t imagine doing that.”
Without participating in the clinical trial, Ryan would have had to continue taking medications and he’d likely still experience debilitating symptoms from sickle cell disease.
As hopeful as this clinical trial is, Eckrich notes that it isn’t necessarily the right treatment for every person with sickle cell disease.
“It’s still a long and arduous journey, and the risks and benefits have to be carefully considered and discussed with hematologists,” he says.
Our comprehensive hematology programs at Atrium Health Levine Children’s in Charlotte and Winston-Salem are the best places in the region to receive care for sickle cell disease, says Eckrich.
“Our team has the expertise and experience to deliver these therapies,” he says. “Our nursing care is second to none. These therapies require great care teams, and our teams are fully prepared to support these brave patients.”
Ryan’s hope for a brighter future
“Ryan is awesome and I’m not just saying that because he’s my son,” says Kim.
Ryan loves video games, anime, dinosaurs, math, the family’s dog, Snoopy, and his older siblings. Kim also notes that Ryan is a grateful person and has excellent manners.
“When I hear him thanking his nurses or telling people to have a good day, I tell him I’m so proud of him,” she says. “He’s been through a lot, but to look at him, you wouldn’t imagine it. He has such a pleasant attitude.”
Kim offers advice to other parents of children with sickle cell disease: “Believe them when they say they’re hurting. Let them know they’re not bothering you and to please tell you if they’re hurting or don’t feel well.”
Ryan is pursuing his GED and has just one class to complete before he reaches his goal.
Eckrich is on a mission to help Ryan and other kids with sickle cell disease have a better quality of life.
“To me, this means Ryan has been empowered to beat his sickle cell disease,” he says. “I hope the treatment provides him a durable, functional cure without tradeoffs. He is strong and his future is bright. I look forward to seeing where he goes now that he’s not going to be battling sickle cell disease symptoms all day, every day.”
Learn more about the sickle cell disease care offered at Atrium Health Levine Children’s Hospital and Brenner Children’s Hospital.
