'Sickle cell warrior' to throw out RiverDogs' first pitch on Labor Day weekend

When the Charleston RiverDogs face off against the Fayetteville Woodpeckers on the Sunday before Labor Day, a teenager with sickle cell disease will throw out the first pitch. September is Sickle Cell Awareness Month, so a lot of sickle cell advocates from MUSC Health will be on hand to watch.

Dreylan Holmes, known as Dre to friends and family, is ready for his big moment. “Dreylan is a boy's boy,” said his mother, Vesha Jamison.

The 14-year-old freshman at Ridgeview High School in Columbia has battled sickle cell disease since birth with the support of friends and family. His mother is one of his strongest advocates.

“I don't say this just because he's my child, but he is the most considerate, sweetest child I know. He's loving and caring. He is very resilient. He's a go-getter. He doesn't like for anything to get the best of him. He's super smart, and he is so lovable.”

 

Dreylan is also a good researcher, according to his mom. “He is aware and very knowledgeable about his condition, and he is his very own advocate. Mom's his advocate, but he does advocate for himself. He has a voice like none other when it comes to his care and treatment. All his doctors know that he loves to be a part of his care plan.”

Right now, Dreylan and his family are deciding if his care plan should include gene therapy treatment with the team led by Jennifer Jaroscak, M.D., at MUSC Health’s Rena N. Grant Sickle Cell Center and the MUSC Shawn Jenkins Children’s Hospital. 

“We will be doing a consult there, and if we all decide that he should move forward, he would be treated there,” Jamison said.

It’s been less than a year since the Food and Drug Administration approved the first cell-based gene therapies for sickle cell disease. The inherited condition causes “sickled” or banana-shaped blood cells that stick together more easily, affecting blood flow and oxygen throughout the body. The result is excruciating pain and damage to tissues and organs. People with sickle cell disease are also at risk of developing further complications, including stroke and blindness.

The gene therapy treatments seek to prevent that. They collect and modify cells and then return them to the patient through an intravenous infusion. MUSC is the only approved treatment site in South Carolina. In July, it became a qualified treatment center with Bluebird Bio to administer Lyfgenia (lovotibeglogene autotemcel) for sickle cell disease. MUSC is also in the process of becoming an authorized treatment center with Vertex Pharmaceuticals to administer Casgevy (exagamglogene autotemcel), with hopes of being authorized for treatment this fall.

Deciding whether to get one of the new therapies isn’t easy for patients and their families. The treatments involve chemotherapy and carry risks, including infertility. 

But MUSC’s sickle cell team said it’s well-equipped to help people figure out what’s best for them. It has a history of pioneering transformative care for the disease. Retired pediatric medical director Sherron Jackson, M.D., was instrumental in making South Carolina one of the first states to adopt newborn screening for sickle cell disease. Jaroscak, director of Non-Malignant Pediatric Hematopoietic Stem Cell Transplantation at MUSC Health, continues this legacy with her expertise in gene therapy.

 

For now, Dreylan’s sticking with his regular medication and treatments, which include blood transfusions. No matter what he decides about gene therapy, his mom couldn’t be prouder of her son. 

“I just admire so much about him – his drive, his resiliency and the fact that he is so considerate about everyone around him. Even at times when he's in pain, he will still ask, ‘Mom, what's wrong? Are you okay?’ And I'm like, ‘I'm supposed to be caring for you,’” she said.

Jamison, the sickle cell account manager for the South Carolina Region of the American Red Cross, had some advice for families dealing with a new diagnosis. “This is a tough disease. I wouldn't dare dress it up and put a cute little ribbon or bow on it because it is very challenging,” she said. 

“But being educated, knowing how to be the best caregiver and connecting with other caregivers help. You should also have some sort of self-care regimen because everybody knows the caregiver just doesn't take care of themselves sometimes.”

If they’re lucky, they have a son like Dreylan to help – even as he fights his own battle with the disease. “It warms my heart to see just how loving and caring and compassionate he is. Even though he is the patient, he is truly a warrior. They take being a sickle cell warrior to a whole other level when you talk about all the things that they go through and how they're able to bounce back. He’s amazing,” Jamison said.

People can take action in the fight against sickle cell disease by donating blood products, registering for the NMDP, formerly known as the National Marrow Donor Program, and knowing their own sickle cell carrier status. People with sickle cell disease rely on blood products for life-saving transfusions, and there is currently a critical shortage. You can find locations for donating blood products through the American Red Cross.

More resources: 

Sickle Cell Trait Screening

Sickle Cell Disease Association of America

South Carolina Department of Public Health