By Sean Yoes
It is believed that a mother’s love is the salve that can heal all wounds. But, even a mother’s love is put to the test when it comes to grappling with a deadly disease imperiling her child. That is the focus of the deeply personal, heart-wrenching and ultimately triumphant story that Tyrene Gibson has penned titled, Mothering the Crescent Moons.
Mothering the Crescent Moons is Gibson’s account of her daughter Aya Gibson Taylor’s battle with sickle cell disease (SCD). SCD affects millions of people around the globe and a disproportionate number of people whose ancestors are from sub-Saharan Africa, South America, the Caribbean, Central America, as well as other people of color, according to the Centers for Disease Control (CDC).
During a recent phone conversation, Gibson, a Baltimore native (she now resides in New Jersey), revealed that the sickle cell trait was prevalent in her family. “My brother Chiefy and I, we always knew we had the trait. I know that it came from my dad’s side and I know that my grandmother also carries the trait on my father’s side. Aya’s dad (Hakim Taylor) has the trait,” Gibson said. So, it seemed inevitable that Aya would have to embark upon this perilous and potentially deadly sojourn.
According to the Mayo Clinic, red blood cells are typically round and flexible, allowing them to move easily through blood vessels. However, with sickle cell disease (sickle cell anemia is just one of a group of inherited disorders known as sickle cell disease) some of the red blood cells are shaped like sickles or crescent moons (hence the title of the book). Those cells can be rigid and sticky, which can slow or block blood flow. Other symptoms of SCD include: anemia, episodes of excruciating pain, vision problems, delayed growth or puberty, swelling of hands and feet and frequent infections.
“So, I found out (Aya had SCD) once I was pregnant. I had serious conversations with my doctor, like what does this mean? Because…I only knew about having the trait, I never had the disease. I never had any issues health wise. So, I really didn’t know much about it,” Gibson revealed. “Can kids live with this disease? And he (Dr. Jeffrey Mazlin) was like, “Absolutely.” I wanted him to be honest and up front with me and he was and I’m so thankful and grateful for him,” she added. “So, I had her and she was fine.”
In fact, Aya, despite being born premature, seemed so healthy that her mother started believing her doctor had made a mistake with his diagnosis. “She came out six weeks early…but she was fine, just like a normal baby,” Gibson said. “I was hoping in my mind that maybe they misdiagnosed her, maybe she doesn’t really have the disease.”
However, the devastating disease first began to attack Aya when she was three-years old. And for almost nine years she endured one or two excruciating pain episodes annually, as well as long stints in the hospital for various reasons related to sickle cell disease. But, after vigilant lobbying of medical professionals of every type on the part of her parents, and then absorbing copious amounts of information about the treatment of sickle cell, Aya was finally poised to receive the miracle she and her family had been praying for.
On August 1, 2012, just a few weeks before her 12th birthday Aya received a potentially life-saving bone marrow transplant, under the care of Dr. Jennifer Krajewski, attending physician, Department of Pediatric Stem Cell Transplantation and Cellular Therapy. “She did two rounds of chemo, which wiped out her whole immune system. The process was pretty intense,” Gibson said. “Now she’s cured of sickle cell anemia…and she’s living a normal life like any other young adult.”
Yet, there was still another chapter to be played out in Aya’s odyssey with sickle cell disease. And this chapter also had a happy ending.
On July 9, 2016, Aya (then age 15) was able to travel to Heidelberg, Germany to meet the man who provided the bone marrow that ultimately destroyed the debilitating disease that had tormented her for almost a decade.
“It was so surreal to know that somebody helped me like that,” Aya said during an interview for the website “Tackle Kids Cancer,” an organization that Aya, now age 20, works closely with as an advocate for the transplant community. “He and his wife were so sweet. They were so happy that I was okay. Now they are like family,” she added. “I look at life differently. Without a transplant, I would still not be able to do a lot of things. I want to make the most out of my life. Not that many people get a second chance.”
She is making the best of that second chance and focused on “paying it forward.” Aya is currently a student at Loyola University in New Orleans, studying biology with the goal of becoming a pediatric hematologist, like her physician Dr. Bruce Terrin, who has been instrumental in Aya’s battle to defeat sickle cell since her mother was pregnant with her.
Tyrene Gibson has been determined to tell their story since those dark days before Aya’s bone marrow transplant, when her daughter bravely endured prodigious pain. After years of starts and stops she has delivered Mothering the Crescent Moons, which is a road map for others navigating the onslaught of this deadly disease.
“I started writing it when she was 10…I started but I put it down. Then when the pandemic hit and we really couldn’t go out that much, we were in the house. I said, you know what, I need to finish this,” said Gibson who is a real estate professional, first-time author and serves as the New Jersey ambassador for the Be the Match National Marrow Donor Program.
“I want to be able to help other people so that their kids don’t have to suffer for the rest of their life, or die from sickle cell, or complications from sickle cell,” Gibson said. And for those people that she hopes to inspire and help she offers six principles:
“Never give up, keep your options open, one door closes, look for another door or even a window,” she said. “Keep learning about new technology and developments, ask a lot of questions, and pray.”
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