Shea and Shawn Guillory’s journey to parenthood has been a complex one that’s been characterized by high peaks and low valleys. Along their journey, the Georgia couple lost a set of twins at 19 weeks gestation, an ordeal that almost claimed Guillory as a victim of maternal mortality. The experience was devastating and discouraging to the pair’s dream of starting a family. But then, something magical happened. The Guillorys conceived another set of twins and welcomed them into the world.
The birth of rainbow babies Sawyer and Saxton made the corporate tech investor and her husband ecstatically happy, but a plot twist was quickly introduced to their happily ever after. One of the twins, Sawyer, was diagnosed with sickle cell disease (SCD), a hereditary blood disorder that affects one out of every 365 Black or African American births in the United States, just weeks after he was born. “It was a really gut-wrenching blow,” Guillory says, reflecting on her infant son’s diagnosis five years ago. “I was in denial, at first. I was devastated. I didn’t want to believe it,” Guillory, the founder of non-profit organization Sawyer’s Sickle Circle, tells EBONY. “I blamed myself. I blamed my husband because he didn’t know that he carried the trait.” While Guillory knew that she had sickle beta plus thalassemia (a type of sickle cell disease that affects hemoglobin), her husband was unaware that he was a carrier of the sickle cell trait. Although the pair discussed the possibility of him also carrying the trait after meeting at Georgia State University and beginning their dating relationship, they “never circled back to it,” she explains.
After receiving Sawyer’s diagnosis, Guillory asked her children’s pediatrician where she would seek treatment if her own son had been diagnosed with sickle cell disease, which led her to the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta.
“They’ve been a part of our journey since the very beginning,” says Guillory, who immediately began to scour the internet for any helpful information she could find about sickle cell disease and later took her findings back to Sawyer’s medical team. “I was so concerned. I felt like I was being given a death sentence for my son and the only thing that I could think about was life, life, life, and living. Where’s the cure? That’s what drove my research.”
It was through her research that she learned a bone marrow transplant from a closely matching donor could potentially cure Sawyer of the disorder. From there, she immediately began advocating for doctors to consider performing the procedure on Sawyer, hopeful that his twin brother, Saxton, would be a match. “I went back armed with information. I shared what I read with the doctors, who listened,” Guillory recalls. The physicians presented other options and warned of the potential complications and side effects of a bone marrow transplant, providing the twins’ mom with a complete set of data and info so she could make the best-informed decision for her child. After reviewing the options and the pros and cons, Guillory decided that the bone marrow transplant was the best option for her Sawyer—so the twins immediately underwent testing to determine if they were a match. “What took days felt like it took weeks and months,” says their mom. When the news finally came through that Saxton was a match, it was delivered personally by the center’s hematologist.
“I literally dropped to my knees and thanked her and started thanking God. I felt like a weight had been lifted from my shoulders. I felt so bad because my son had something that was passed down from me and his father. Even though we gave him life, my son had something that could literally take him out of here,” recalls Guillory. “The individual that he was born with in my womb would be his saving grace. My son was literally the cure for his brother.”
After nearly three years of treatment and testing, Saxton and Sawyer underwent a successful bone marrow transplant. “As a mother, when you’re wanting to get your child to the finish line, they gracefully held my hand,” says Guillory of the team at the Aflac Cancer and Blood Disorders Center, who guided her and her family through the process.
Thankfully, for the Guillory family, The Aflac Cancer and Blood Disorders Center was able to help them and many more families across the country deal with such an arduous ordeal. For over 26 years, Aflac has remained committed to the sickle cell disease community by providing wraparound support to children stricken by this painful illness and to their families. The sickle cell disease program at the Aflac Cancer and Blood Disorders Center is the largest pediatric program in the United States—on average, the center cares for 2,000 patients annually. The company has donated more than $6 million to the program. Plus last year, the Aflac Cancer and Blood Disorders Center was named a Top 10 Best Pediatric Cancer Program by U.S. News and World Report, and it ranked number one in the nation for total sickle cell disease discharges. Aflac aims to shine a light on sickle cell disease and advance health equity and education as it relates to sickle cell disease in all communities.
As a sign of its commitment to bringing public awareness to this debilitating illness that largely affects communities of color—and especially those within the African American community—this past June, for World Sickle Cell Day, Aflac launched the #AflacSickleCellSense campaign, a social media campaign, which will run through September that aims to start and drive conversations surrounding sickle cell disease as a societal issue. “Knowledge is power. We need to talk about this issue,” says Guillory. “It’s something we should speak about all of the time because [it’s] in our lives—it’s every day.” Another way that Aflac is keeping the conversation going is through the Aflac x EBONY Community Connect webinar, slated to take place on Sept. 30th, and which will feature panelists and experts who will broaden awareness and discuss the impact of sickle cell disease on the Black community-at-large and what can be done to lessen it.
Additionally, Aflac has moved to expand its award-winning My Special Aflac Duck® program to offer supplemental social-emotional support for children living with sickle cell disease. The robotic comforting duck, which was originally introduced to support children with cancer, will be distributed at the start of 2022 to kids above the age of three with sickle cell disease, free of charge. The new version of the My Special Aflac Duck will be tailored to meet the unique emotional needs of sickle cell patients and their caregivers. “They’ve created something really special,” Guillory says of the soothing duck. “It’s great for kids who may be introverts or like, my kids were very young and had a hard time expressing themselves. It comes with a blanket. It comes with an app where you can give it water. You can give it medicine and that’s really important.” Through a pilot program at the Aflac Cancer and Blood Disorders Center, which first introduced the ducks to more than 100 sickle cell patients in 2020, families shared with researchers that the ducks helped soothe the emotional stress that sickle cell disease imparts on children. “When my son needed to express himself but didn’t know how to do so verbally, he was able to use the duck,” shares Guillory. Further, the duck helped during the pandemic since the boys were spending a lot of time away from each other and Saxton could no longer join Sawyer for doctor’s appointments.”
As mentioned above, sickle cell disease largely impacts communities of color, especially Blacks and African Americans. Below are a few answers to address the common concerns and questions on how the illness largely affects our community.
What is sickle cell disease?
Sickle cell disease causes red blood cells to become crescent-shaped. The awkward shape of the blood cells, paired with the fact that they are hard and sticky, causes them to clump together; thus, hindering oxygen flow to the rest of the body. According to Stanford Children’s Health, once cells clump together, the blockage causes pain and can even cause damage to major organs.
While sickle cell disease also impacts people of South American, Caribbean, Central American, and Saudi Arabian ancestry, it disproportionately affects African-Americans.
How do people get sickle cell disease?
Sickle cell disease is passed from parent to child. As explained by the CDC, “If both parents have the sickle cell trait, there is a 25% chance that the child will have sickle cell disease.”
What are the symptoms of sickle cell disease?
According to the Mayo Clinic, common symptoms of sickle cell disease include episodes of severe pain, anemia, fatigue, swelling of hands and feet, recurring infections, impaired vision, stunted growth, and delayed puberty.
Is there a cure for sickle cell disease?
Presently, one cure for sickle cell disease is available, which is a bone marrow transplant. The Aflac Cancer and Blood Disorders Center is one of the largest transplant centers in the nation. However, like most other transplant procedures, one of the many obstacles to having this procedure is finding a willing donor who has a closely matching bone marrow. When a stem cell transplant is not an option, as explained by Sophie Lanzkron for Johns Hopkins Medicine, physicians often prescribe “strong opioids” to mask the pain brought on by crisis episodes. As it stands, there are two other FDA-approved medications for managing sickle cell disease and both have been proven to prevent those painful episodes.
Why is sickle cell disease still a problem in this day and age?
Sickle cell disease was first identified in a patient in 1910. Despite this discovery being more than 100 years old, limited funding and awareness of this hereditary disease persist. A variety of factors contribute to the lack of understanding of sickle cell disease; however, a primary driver that keeps physicians in the dark is limited funding for research. In order to truly move the needle, groups that are not primarily affected by sickle cell disease will have to join the rallying cry for change.
What can I do to help?
There are many ways that people can join the fight to eradicate sickle cell disease. A great place to start is by educating yourself on the illness by reading literature and joining informative conversations such as the Aflac x EBONY Community Connect webinar on Sept. 30.
You can also donate to vetted charities and research funds with a focus on supporting those living with sickle cell disease. Or, join a bone marrow donor registry, which can help to match you with sickle cell disease patients who are in dire need of a transplant. Lastly, you can make genetic testing a part of your family planning process to determine if you and your partner both possess the sickle cell trait.
For more information about Aflac’s commitment to sickle cell disease, visit www.aflac.com/sicklecell. You can also sign up here to receive an email when My Special Aflac Duck is available for children with sickle cell disease.