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When my son, Sawyer, was diagnosed with sickle cell disease (SCD), I was in denial. My husband and I tragically lost twins a year before I became pregnant with Sawyer and his twin, Saxton. Now, this diagnosis felt like another death sentence. I knew SCD well, as it is hereditary. I’ve lost family and friends to it. I know the pain and havoc it causes, and I did not want that for Sawyer.

SCD is an inherited blood disorder and a devastating lifelong condition most prevalent among the African American community. According to the CDC, it impacts about 100,000 Americans and occurs in about 1 out of every 365 Black or African American births. Its effects are compounded by the stigma associated, particularly with children, who require constant hydration and medication and are extremely susceptible to cold, stress and overexertion. No child wants to be different.

Sawyer was diagnosed with sickle cell SS, the most severe form, but as his mother, I was not going to take it lying down. I was determined to advocate, fight and maintain hope we would find a cure for Sawyer.

Despite recent treatment developments, no universal cure exists and the community is not receiving needed care. SCD is severely underfunded and lacks the visibility that other chronic illnesses have.

I asked Sawyer’s pediatrician where she would take her baby for care and she directed us to the Aflac Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta.

We quickly booked Sawyer’s s first appointment when he was one month old. I immediately thought, “Aflac, like the duck? How cool is that?” I had no idea how involved Aflac already was in the sickle cell community and how much they would become a part of our family's journey. Sawyer’s hematology team and doctors understood my need to be an advocate for my son, and together we created the best plan for Sawyer.

While researching, I found Be the Match and discovered the only known cure for SCD was a bone-marrow transplant. In my heart, I knew I found the answer. His doctor was happy to consider it. Still, a transplant wasn’t a leisurely walk in the park. She said we needed to weigh the pros and cons and explained that the best outcome would be a sibling with the same mother and father.

I pointed to the stroller: “Have you not met the adorable fraternal twin that accompanies us to appointments?” She explained that being his sibling wouldn’t be enough. A test would determine if Saxton was a good donor candidate for Sawyer.

Saxton tested, and I impatiently waited to get the results. Then, we got the amazing news: Saxton was a perfect match. Who knew that my son’s twin would literally become his saving grace? Sawyer was born with his cure.

For emotional and psychological reasons, I wanted Sawyer to be young enough not to remember but old enough so his body would be strong to withstand his transplant.

The twins were three years old when we hugged our loved ones goodbye. Sawyer would not return home for three months. I walked into the hospital knowing that I may walk out alone or with a shell of what he once was — or we could leave with a new lease on life.

And we did. His transplant worked.

One challenge during our transplant journey was separating the twins. The day Saxton came to the hospital to harvest his bone marrow was the last time the twins physically saw each other until Sawyer left the hospital. Birthdays, anniversaries and holidays were spent away from home.

During Sawyer’s transplant, Aflac piloted a program for sickle cell kids and their My Special Aflac Duck. Sawyer and Saxton were each given one, and they love them. Saxton’s duck is Lucky, and Sawyer’s is Daxton, lovingly named after his life-saving twin. These ducks were pivotal for our family.

Because of the pandemic, Saxton couldn’t attend checkups with Sawyer. Using the ducks' great features like the emotion cards helped them express their feelings and cope with being isolated. These robotic companions helped comfort the boys during difficult times.

I founded Sawyer’s Sickle Circle, a nonprofit assisting sickle cell families to generate awareness, address misconceptions about SCD and encourage individuals to get screened for the SCD trait. We encourage others to be bone-marrow donors. Some children are not as fortunate to have sibling donor matches, so the more people of color we sign up, the better chance we have to save lives.

I have big dreams and plans for Sawyer’s Sickle Circle. It won’t be easy. My son found success, and I promised that if we came out of this journey on the other side, I would spend the rest of my days giving back, assisting others on the same path. That is precisely what I am doing.

Shea Guillory

Writing since August 2021 · 1 story contributed