Saxton (l) with twin brother Sawyer (r), a sickle cell disease patient at the Aflac Cancer (Photo credit: Aflac)
According to the Centers for Disease Control and Prevention (CDC), 1 in 365 Black American babies will have sickle cell disease. By comparison, only 1 in about 14,000 Hispanic Americans will have the condition. There are ways to manage sickle cell disease but severe symptoms can significantly affect a child’s quality of life. Currently, the only way to cure sickle cell disease is through a bone marrow transplant and that’s how Saxton saved his brother, Sawyer.
Babies who have sickle cell disease can present symptoms within five to six months. However, depending on which form of the disease they have, they can have health issues much earlier.
Those who have the HbSC form of the disease may not see symptoms until their preteen or teen years while the children with HbSS can show severe symptoms within a week or two of birth.
It’s this form of sickle cell disease that led Sawyer’s mother to bring him to the doctor for assessment when he was only a couple of weeks old. At the young age of three weeks old, Sawyer was diagnosed with sickle cell disease.
While O’Shea Guillory was devastated by the news, she was determined to help her son. After doing some research, she came across a possible cure – a bone marrow transplant.
When she talked to the doctor about it, though, she was presented with another possible roadblock. It can be difficult to get a match for Black people with sickle cell disease because there aren’t a lot of Black American donors.
Even when you have donors of the right ethnicity, there’s no guarantee that they’ll be a match. In fact, O’Shea was encouraged not to get her hopes up that Sawyer’s fraternal twin, Saxton, would be a match.
Still, she had Saxton tested and waited with bated breath for the results. Finally, she got the good news that her son’s fraternal twin was a perfect match. To ensure that Saxton could safely undergo bone marrow donation, she waited another three years before going ahead with the procedure. The operation was a success and the twins have gone on to live healthy lives.
Given her experience, however, O’Shea wasn’t going to leave things at that. She’d witnessed firsthand how little information was available about sickle cell disease and Black Americans even though it predominantly affected the Black community. She was also perturbed by how few Black bone marrow donors were available when it’s currently the only cure for the disease.
As a result, she founded Sawyer’s Sickle Circle, a nonprofit organization that assists sickle cell families to generate awareness, address misconceptions about SCD, and encourage people to get screened for the SCD trait. She also emphasizes that Black people need to look into being bone marrow donors as this is a critical area.
Photo credit: Aflac
As mentioned previously, sickle cell disease affects Black Americans at a far greater rate than any other ethnicity. Additionally, they can experience more severe symptoms and are prone to developing rare forms of the disease as Sawyer did.
In cases like these, getting a bone marrow transplant is their best bet at being cured of the condition and living a healthy life. Unfortunately, there aren’t many Black bone marrow donors, and most Black Americans with the condition have to wait for some time before they can get the treatment they desperately need.
RELATED: What To Expect From Bone Marrow Donation
The best thing you can do is talk to your doctor or a medical representative who deals with bone marrow donation about being a donor. While facilities have specific guidelines, the general criteria for being a donor include being of good health and between the ages of 25 and 50. It only takes a few blood tests to confirm your eligibility.
The story of Saxton and Sawyer is a touching one that highlights how lives can be changed when someone with sickle cell disease gets the gift of a bone marrow transplant. Many children with the condition aren’t as lucky because there is a deficit in Black American donors. You can help them by becoming a donor if you’re eligible.
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