For most of his life, Jimi had a hard time envisioning the future. How many times had people told him he wouldn’t live to see his 20th or 30th birthday? On his first date with Amanda, when they were in their early 20s, he put down the menu and told her he had sickle cell, and that he understood if that was a dealbreaker. …
To manage Jimi’s sickle cell, the couple forged a powerful partnership. They could handle anything together. But with a baby on the way, the stakes changed.
“I thought I was going to die,” Jimi said. “I thought, ‘I can’t leave my wife with a son and not be here for them.’”
In November 2019, Jimi and Amanda flew to Nashville to meet with Haydar Frangoul, the pediatric hematologist leading a trial of a CRISPR gene therapy for sickle cell disease at Sarah Cannon Research Institute. They learned shortly after Christmas that Jimi qualified for the trial. Their son, Sebastian, had just been born. It felt like a gift.
From start to finish, Jimi’s treatment would take the better part of a year. First, his stem cells needed to be collected from his blood. This required long car trips to Nashville and being hooked up to a machine for hours at a time. Once the researchers collected enough stem cells, they edited the cells to disable the BCL11A switch. Then the cells needed to be carefully checked for quality.