A Cure for Byron
Byron was born with severe sickle cell disease, a painful, genetic blood disorder that can cause fatal organ blockage. As he grew, his symptoms continually worsened. Frequent pain crises and exhaustion from anemia eventually became so severe that the dedicated student had to drop out of medical school.
But instead of giving up, Byron searched for experimental treatments and cures on the internet. While no treatment options existed in his home country of Honduras, he eventually came across a promising trial at the NIH in Bethesda, Maryland. When he was accepted into the trial, he celebrated.
In 2019, Byron underwent a bone marrow transplant. The grueling treatment successfully cured him of sickle cell disease. Byron, 30, is back home in Honduras where he is continuing to recover from his transplant and allowing his new immune system to strengthen before he returns to med school. His dream is to return to the NIH in the future as a researcher, not a patient.
“Being at The Children’s Inn was very cozy from day one. The facility, the staff, the volunteers and all the activities that they schedule for the guests make you feel safe and happy, forgetting at times the huge burden of participating in a clinical trial and its side effects. The Children’s Inn is without a doubt what its slogan says, a ‘place like home.’”
NIH Sickle Cell Research
National Heart, Lung and Blood Institute (NHLBI)
In 2018, the NIH launched the Cure Sickle Cell Initiative. Led by NHLBI, the research effort aims to accelerate the development of promising genetic therapies to find a widespread cure within the near future. In the meantime, NHLBI is also continuing clinical stem cell transplant trials like the one Byron participated in to make the transplant process safer and easier on the body.