At just 7-years-old, Dakhiyon is one of the more than 100,000 people in the United States battling Sickle Cell Disease (SCD), an inherited red blood cell disorder. Patients facing SCD rely on blood transfusions to manage their symptoms. SCD causes red blood cells to become hard, sticky and sickle shaped rather than round and flexible. When they move through the small blood vessels in the body, they can get stuck and block the vessels. This can lead to severe pain and other complications.
Dakhiyon is battling one of those SCD complications known as Moya Moya Syndrome that blocks key arteries to his brain. This disease takes a serious toll on his body. As a way to manage his symptoms, Dakhiyon receives blood transfusions every three weeks. However, he needs a cure: a stem cell transplant.
Dakhiyon is not alone, though. His 3-year-old brother, Marzavion, is also fighting SCD. An inherited disease, SCD is passed on to children from parents through genes. Genes that are defective cause blood-forming stem cells in the bone marrow to make faulty hemoglobin.
Blood transfusions are an important way to manage the symptoms of SCD, but it’s not the permanent solution. A stem cell transplant is the only known cure for SCD. This transplant replaces the defective blood-forming cells with healthy cells. Patients receiving a stem cell transplant must go through chemotherapy first, requiring blood transfusions during this process as well as they prepare to receive the transplant.
Though both brothers are facing SCD, Dakhiyon is urgently in need of a blood stem cell transplant. His family is searching for a matching donor who could provide the potential cure through Be The Match. As an African American patient, he only has a 23% chance of finding a match on the registry. Seventy percent of searching patients don’t have a match in their own family and rely on a genetically matched donor to save their life. According to the U.S. Food and Drug Administration (FDA), SCD affects 1 in 365 African Americans and 1 in 16,300 Hispanic Americans.
Dakhiyon is relying on the generosity of strangers: first to provide the blood he relies on for transfusions to manage his symptoms, and then on the stranger who will donate his cure, the stem cell transplant that will change his life. Eighty percent of stem cell donations are made similarly to donating plasma or platelets, a process many donors are already familiar with and participate in regularly.
Thank you to blood donors for helping Dakhiyon manage his symptoms, and to those on the Be The Match registry to help patients like Dakhiyon find a cure.
To learn more about Be The Match or to become a bone marrow donor, please visit join.bethematch.org/cbc.