In sub-Saharan Africa, an estimated 50-80% of children with sickle cell anemia will die before adulthood*. This is a fact that Maryl and Bryce never lose sight of.
High school sweethearts, the couple always knew they wanted to adopt and the day they met their sons—Judah and David—was the best day of their lives.
The new family traveled home from the Democratic Republic of the Congo and spent the first two weeks of their homecoming nesting. “The first time we left the house was for the boy’s newborn wellness checkup,” says Bryce. Though the boys were 2-years-old, they had not had access to this important medical screening in the Congo. Everything looked good, but a follow-up call reveled devastating news—Judah had sickle cell disease.
Maryl, a nurse, immediately understood that sickle cell was a life-changing diagnosis. Thankfully, the initial care Judah required was minimal. Then, one morning something wasn’t right. Trusting their instincts, Judah was rushed to the hospital and an MRI revealed that their precious little boy had experienced a significant stroke.
“When we got the call that Judah had sickle cell disease I couldn’t look at our homecoming pictures without being mad. This wasn’t supposed to be us! Then, just about the time we got comfortable with how our lives would be dealing with sickle cell disease, Judah had his stroke,” says Maryl.
The news was hard to take in. Judah’s sickle cell had become much more serious, but a ray of hope shined though—a marrow transplant could be a cure.
“Our doctors explained that, because of his ethnicity, Judah’s hopes of finding a match were low—less than 20 percent,” says Bryce. “Then a 5 out of 6 umbilical cord blood match was located and we thought—wow! He has a match. It felt meant to be.”
Maryl and Bryce sprang into action. With the hospital 3 hours away, the family had to make some hard choices. They sold their house, and Maryl took time away from work so she could be with Judah 24-7. “It was hard, but we got through it,” says Bryce.
In total, Judah spent 60 days in the hospital. Fifteen days preparing his body for the transplant and 45 days to ensure his immune system was stable enough for him to go home. “Restricting a 2-year-old to a 12×12 room for weeks… Judah took it like a champ,” says Bryce. “Especially because he was too little to understand that the chemo and pokes were all for his own good.”
On December 11, the exhausted, but hopeful family was discharged to celebrate the holidays at home. “It was a hard holiday, but we left the hospital feeling like it was worth the sacrifice —that, because of this process, Judah would be able to celebrate many, many more holidays disease free.”
Sadly, on January 7, just as the family was dreaming of plans for a brand new year, they received heartbreaking news. Judah’s body had rejected the transplant.
“We had a lot of sadness after receiving this news,” says Bryce. “It was a true grief process, but we still had hope. We recognized that if Judah was still in the Congo, he would have experienced a very painful life—limited access to clean water, let alone medical care. But this wasn’t his path. He was matched with a family who loves him. His mother is a nurse and one of the best children’s hospitals in the country is only a few hours away.”
Today, the family makes monthly trips to St. Louis for Judah’s blood transfusions. Maryl and Bryce do their best to make “hospital day” fun, but Judah is starting to understand that his disease limits him, asking questions such as, “After no more sickle cell, then can we go to the lake?”
“We are grateful. Because of doctors, researchers and technology—his sickle cell can be cured. And we have dual hope—hope that Judah will find his perfect match and hope that we can inspire others—specifically first generation Africans—to join the registry because so many families have a loved one searching for their match,” says Bryce.
Their faith and support from family and friends help them get through the day-to-day. “We are confident that Judah’s match is out there. If he had been cured at age two, we could tell him about it. Being older, he’ll better understand what he’s going through and, if we’re lucky, one day we’ll be able to hug the special person who will save his life,” says Bryce.
The family regularly host registry drives and does everything they can to spread the word about the need for marrow donors. “It’s given us so much hope to watch our community give, join or volunteer for Be The Match. For us, it means that people care about our son.”
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*according to a study published by the Public Library of Science (PLOS)