ST. LOUIS聽鈥 Three days of chemotherapy gave Damon Williams so many mouth sores that he couldn鈥檛 swallow his own saliva, much less eat. His skin darkened. His hair fell out. He was so dizzy a nurse had to steady him when he stood up.
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鈥淒id you ever think this day would come?鈥 Damon Williams asks social worker Bonita Washington, while receiving a transfusion of his modified blood stem cells at Barnes-Jewish Hospital on Tuesday, May 12, 2026. Williams has sickle cell disease, a blood disorder that causes red blood cells to develop into a crescent, or 鈥榮ickle鈥 shape.
Damon Williams show sores that cover his body as a result of chemotherapy at Barnes-Jewish Hospital on Tuesday, June 2, 2026. After receiving gene therapy to treat his sickle cell disease, he underwent chemotherapy to wipe out the bone marrow and give his modified blood stem cells a chance to take hold. The side effects Williams experienced include skin sores, hair loss, debilitating mouth sores, waves of nausea and weight loss.
Damon Williams touches the skin around his eyebrows after undergoing chemotherapy after receiving gene therapy for his sickle cell disease at Barnes-Jewish Hospital on Friday, May 22, 2026. Williams鈥 hair and beard began falling out, so he shaved to make it easier to manage, and is concerned his eyebrows might fall out too.
鈥淚鈥檓 positive that when I feel my first really, really good day, all of this will feel like a cakewalk, and it鈥檒l all be worth it,鈥 Damon Williams said at Barnes-Jewish Hospital in 最新杏吧原创, on Tuesday, June 2, 2026. After three days of chemotherapy, Williams felt lethargic and weak. He lost almost 20 pounds, developed skin sores across his body as well as painful mouth sores that prevented him from eating. The chemotherapy鈥檚 purpose is to wipe out his bone marrow so his modified blood stem cells can take hold and produce new blood cells to treat his sickle cell disease.
Damon Williams, of Creve Coeur, reacts to a bad taste in his mouth as a result of the blood stem cell infusion to treat his sickle cell disease and eats a lolipop to camouflage the taste at Barnes-Jewish Hospital in 最新杏吧原创, on Tuesday, May 12, 2026. For gene therapy, Williams had his stem cells removed, genetically modified, then transplanted back into his body. The next step is to undergo chemotherapy to wipe out the bone marrow, so the modified stem cells can take hold.
鈥淭hat鈥檚 the mission. Plant the seed of the tree that you鈥檒l never be able to enjoy the shade of,鈥 says Damon Williams as he hugs his friend Teara Norris, left, and social worker Bonita Washington at Barnes-Jewish Hospital on Tuesday, June 2, 2026. Both Norris and Washington have sickle cell disease, and Norris will be the next candidate to receive the same gene therapy treatment that Williams is undergoing.
Damon Williams turns off an alert on a machine at Barnes-Jewish Hospital on Tuesday, June 9, 2026. Williams is connected to a line to receive nutrients and pain medication intravenously because swallowing pills and food was sometimes too painful for him after chemotherapy.
Damon Williams wheels his IV pole back to his bed after using the bathroom for the last time on the morning of his discharge at Barnes-Jewish Hospital in 最新杏吧原创, on Tuesday, June 9, 2026. Williams spent weeks in the hospital recovering from chemotherapy after receiving gene therapy for his sickle cell disease, and had a central line connected from a port in his chest to the IV pole the entire time, giving him doses of pain medication and a bag of total parenteral nutrition. 鈥淚 can鈥檛 wait to not have this thing around,鈥 Williams said.
Affirmations and mantras are displayed on a whiteboard in Damon Williams鈥 hospital room at Barnes-Jewish Hospital in 最新杏吧原创, on Tuesday, June 9, 2026. After Williams received gene therapy to treat his sickle cell disease, he underwent chemotherapy and spent weeks recovering in the hospital.
Heather Grey, RN, attaches a bag with modified blood stem cells to an IV line that is attached to patient Damon Williams at Barnes-Jewish Hospital in 最新杏吧原创, on Tuesday, May 12, 2026. The infusions will transplant the stem cells back into Williams鈥 bone marrow in order to produce new blood cells as a way to treat his sickle cell disease.
Victoria Williams reacts to seeing her son, Damon Williams, for the first time in weeks as he hugs his father, Ronnie Williams, on his discharge day from Barnes-Jewish Hospital on Tuesday, June 9, 2026. Damon spent five weeks in the hospital receiving gene therapy, then recovering from chemotherapy for his sickle cell disease. Damon is Victoria Williams鈥 second son who was born with sickle cell disease. Her son Christopher died at 12 years old from a stroke caused by the disease.
Rosemary Britts, executive director of Sickle Cell Association, hands Damon Williams a card on his discharge day from Barnes-Jewish Hospital on Tuesday, June 9, 2026. Williams received gene therapy to treat his sickle cell disease then spent weeks in the hospital recovering from chemotherapy. He was the first non-research patient to receive the gene therapy at Barnes-Jewish. 鈥淲e have to do what we can to bring awareness to this,鈥 Williams said.
鈥淣ow it鈥檚 getting back to normal life,鈥 Dr. John DiPersio, left, says as he pops in to say goodbye to patient Damon Williams as he prepares to be discharged from Barnes-Jewish Hospital in 最新杏吧原创, on Tuesday, June 9, 2026. Williams underwent gene therapy treatment to treat his sickle cell disease and spent five weeks in the hospital recovering from chemotherapy.
Damon Williams leaves with his parents, Victoria and Ronnie, as he is discharged from Barnes-Jewish Hospital on Tuesday, June 9, 2026, after he received gene therapy for his sickle cell disease.
Damon Williams falls asleep on his mother鈥檚 couch while watching a movie a day after coming home from Barnes-Jewish Hospital on Wednesday, June 10, 2026. After weeks of treatment for sickle cell disease, he was finally sent home to recover. 鈥淚 just want to nap on my mom鈥檚 big, gray couch,鈥 Williams said.
鈥淏y afternoon, I tend to be worn out. The isolation sickle cell causes is hard.鈥
Damon Williams, who was diagnosed as a 1-year-old
Colleen Schrappen | Post-Dispatch
Reporter
