Asher was adopted from Haiti just before his third birthday. His adoptive parents, Terry and Brad, knew he had serious health issues. He had already required medical care multiple times in his short life. "We knew we needed to get him home," says Terry.
Once in the States, Asher was diagnosed with sickle cell disease. The disease causes a person's red blood cells to not correctly produce hemoglobin, the protein that moves oxygen around the body. The red blood cells become hard and misshapen. Those with the disease can experience episodes of pain, infections, potential organ damage and often early death.
For several years, Asher needed to be hospitalized multiple times a year — once for acute chest syndrome, a serious condition that causes breathing difficulty and low oxygen levels. When Asher was 8, Terry requested that he get a port placed so he could have regular blood transfusion therapy. The transfusions every three weeks "alleviated the bulk of the issues," says Terry, "but it didn't clear everything." Asher's need for hospitalization dropped to about once a year.
But still, the transfusions every few weeks wore on Asher. "He came to me and said, 'Mom, I'm done,'" Terry recalls. He wanted the curative therapy of a bone marrow transplant (BMT). The family came to Children's Hospital of Philadelphia (CHOP) to learn their options.
Asher was certain he wanted to undergo BMT. "For me, the risks involved made me a wreck for a very long time," Terry admits. Prior to the BMT, a patient must undergo chemotherapy, which prepares the body to accept the new cells by "making space" in the bone marrow. "We asked a lot of questions and did a lot of research online. The fact that Asher was absolutely sure he wanted to do it helped a lot. He's the one who lived through all the pain — sickle cell is a painful disease. I can't begin to fathom the pain."
Terry says that the team at CHOP was friendly, listened to them, and "had the confidence that I needed to see." In July 2020, Asher underwent the procedure, "and he did it with such grace," she says with pride. His recovery went smoothly.
Now 14, Asher enjoys drawing, playing with his pets and reading. "We catch him reading at night when he shouldn't be," Terry says with a smile.