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Shea Guillory was pregnant with a set of twins when she experienced the worst possible scenario. She and her husband never got to meet them. They lost the twins at 19 months.
“It was a horrible situation,” Guillory told The Black Wall St. Times in an interview via zoom at the end of August.
That didn’t stop her from trying again. This time, she and her husband welcomed two beautiful twin boys into the world: Sawyer and Saxton.
Family endures journey with sickle cell
Yet, the Guillory family would go on to endure years of stressful hospital visits, procedures, check-ups and a risky bone marrow transplant once Shea discovered her son Sawyer was born with the most severe form of sickle cell disease.
September is Sickle Cell Awareness Month, and Shea Guillory is determined to share her family’s story in order to help others living with the disease.
“I literally felt someone had handed me a death sentence for a child,” Guillory said. Blaming herself, she said she knew she had a form of the hereditary disease but she and her husband didn’t look too far into it while they were dating. It turned out that Sawyer received an S trait from both his mom and dad.
What is Sickle Cell Disease?
SCD is a group of red blood cell disorders which produce sickle-shaped cells that obstruct oxygen flow and cause extreme pain or severe fatigue to young and old patients, according to the U.S. Centers for Disease Control. The sickle cells die early and clog blood flow, which can lead to other life-threatening complications.
The disease occurs in about 1 in every 365 African American births, leading some to call it a “brown” disease. While private companies have expanded treatments in recent years, there remains no definitive cure outside of a bone marrow transplant or experimental stem cell transplant.
Receiving heartbreaking news and becoming an advocate
Shea Guillory said she went through a few days of anger and grief after the diagnosis before she came to a new conclusion.
“I decided I wasn’t going to allow this to be the end,” she said, becoming her son’s main advocate. Determined to find a solution for her child, Guillory was eventually directed to Children’s Healthcare of Atlanta Egleston Hospital.
She would go on to meet with the hematology team at the Aflac Cancer and Blood Disorders Center located in the Atlanta hospital. Aflac, known for its quirky insurance commercials, has expanded its health initiatives to encompass families suffering from sickle cell disease.
Aflac helps sickle cell community
“The Aflac Cancer Center is the most prolific provider of sickle cell disease care in the United States, caring for nearly 2,000 pediatric patients each year and regularly performing the only cure for sickle cell disease – blood and marrow transplants (BMTs),” according to a statement on the company’s website.
“There’s a health disparity here and Aflac wants to stand in the gap and bring attention to this underfunded disease,” added Aflac representative Buffy in an interview via zoom.
The company’s Cancer and Blood Disorders Center in Atlanta was rated first in the nation for total sickle cell disease discharges in 2020, according to their website.
“And that’s kind of how my journey began, and little did I know that Aflac would be so involved,” Shea Guillory said.
In need of a bone marrow tranplant
Guillory said she would come to appointments full of notes she’d taken at home about various treatment options. Eventually she and her doctors agreed that a bone marrow transplant was little Sawyer’s best chance at a full and healthy life.
Marrow transplants require a sibling donor match, and luckily, Sawyer had a twin, Saxton.
But the process involved in preparing for a transplant was anything but easy. Guillory said her other son Saxton was tested once the twins were one-years-old. They spent hours upon hours in the hospital every two to three months going through procedures and tests before Guillory finally received the news she was hoping for.
One day she received a call directly from the doctor, who was excited to tell her Saxton was a perfect match for Sawyer.
“I literally dropped to my knees, and I cried out. I thanked her, and I thanked God. Because I had a weight on me,” Guillory told The Black Wall St. Times. “I blamed myself because it’s hereditary. I blamed us for not completing the discussion” while dating, she added.
Breaking down into tears, Guillory said she will never forget that day.
“It was the most amazing news. My will to never give up led me to that particular day. His team being so open and being willing to hear me being a mother trying to take care of her child led all of us to that outcome.”
How a robot duck helped provide companionship during transplant process
Guillory said she didn’t know what the future would hold but that moment gave her an extended level of hope that her child would be released from this disease.
Now that the transplant had been approved, the next step in the arduous process required keeping the twins sterile and separated.
“His immune system had to be stripped away. He went through chemo. It was a whole lot. But my baby was truly resilient.” Keeping everything sterile required essentially quarantining the twins from each other. That’s where Aflac’s robot duck came in.
In 2018, Aflac teamed up with a research and design studio to create My Special Aflac Duck® — “a robotic companion that authorized professionals can order for free and give to pediatric cancer patients to help them cope with often challenging treatments,” according to their website.
The companion is designed with features to provide comfort and joy to young children undergoing intensive cancer or blood disorder-related treatments.
“It helped the twins cope with the separation,” Guillory said. One way the technology helped was through its color-coded mood indicator, whereby the twins could show how they’re feeling by switching the colors on the duck without having to articulate their emotions.
Aflac pilot program focuses on sickle cell
Guillory said she was happy to be able to contribute to Aflac’s pilot program. “I think it’ll be such a great thing for sickle cell patients to have, especially at the age my sons were.”
Following the pilot program, Aflac plans to debut a fully customized My Special Aflac Duck specifically designed for sickle cell patients in 2022. Guillory said her sons love their ducks, with both giving their high-tech toys loving nicknames.
“I think it’ll definitely help parents and kids be able to communicate,” Guillory said. She’s thrilled that Aflac is expanding even further to support the sickle cell community.
“They’ve always been a part of my journey.”
The bone marrow transplant was completely successful. Sawyer and Saxton are now happy and healthy five year olds.
Becoming a resource for other families
Yet, Shea Guillory isn’t leaving the sickle cell community behind. Determined to be a resource for other families who may not have the support she did, Guillory established a nonprofit called Sawyers Sickle Circle. It offers love, encouragement, and helpful resources for the sickle cell community.
“I made a promise that once we got through this I wanted to give back,” she said. Another goal of the nonprofit involves eliminating misconceptions around the disease. While some people, including Black people, have expressed shock that the disease still exists, Guillory wants people to know that isn’t the case.
“It’s very real. It’s happening. It’s here. But look at my son. My son is living breathing proof that it’s possible to overcome,” Guillory said.
Though only five years old, Shea Guillory said the twins love to talk about their experience. Sawyer loves to show people his scar and Saxton sometimes asks his brother to return his bone marrow.
In a span of a few years, the Guillory family went from tragedy to triumph. Now, she’s paying it forward with her nonprofit to bridge the gap in resources for other families.
“If we put our minds, resources, money and power together, we can make this a situation for more children for more families. It is possible. We just have to dig in and get busy.”