Joshua Biyoyouwei has been a patient of Children’s since being diagnosed with sickle cell anemia at 3 months old. Ever since, he has faced numerous medical challenges, including having a stroke when he was 18 months old after a three-day bout with an extremely high fever.
“That was the worst day of my life,” says Joshua’s mom, Vera Johnson.
The result of the stroke created more challenges for Joshua.
Now 5, Joshua is wheelchair bound and will require physical therapy for the rest of his life. And to ensure he does not have another stroke (50 to 70% of patients with sickle cell anemia who have a stroke will have another if left untreated), Joshua must receive monthly blood transfusions for the rest of his life.
The transfusions work to prevent another stroke and reduce the other symptoms of his sickle cell disease by replacing his red blood cells containing sickle hemoglobin with red blood cells containing normal hemoglobin.
Joshua and his mom Vera share a tender moment while Joshua receives his monthly blood transfusion.
Joshua takes several medications and antibiotics daily, including a medication to reduce the high levels of iron in his body caused from the blood transfusions.
Through all the challenges, Joshua is one of the most upbeat, happy kids you will meet. His smile lights up a room, and he’s eager to meet new faces and give high-fives. He enjoys throwing the football around and playing with his two sisters. He is in kindergarten at Story Elementary in Allen, where he and his mom, stepdad and two sisters live.
Waiting for a stem cell transplant
The one thing that could change Joshua’s life would be a stem cell transplant. A transplant would mean a cure for his sickle cell, no more blood transfusions and stopping the medications he’s taking now.
“It would be a godsend, like a second chance for us,” Vera said. “Joshua would have a better chance at a regular life. He just wants to play baseball and football. And we just want to give him the chance to fulfill his dreams.”
A stem cell transplant would replace the abnormal cells in his body with healthy blood-forming cells. But he still needs to find his perfect match. Only about 25% of patients find a match through a family member. The rest, like Joshua, must rely on finding an unrelated donor through the Be The Match® donor registry for a suitable match.
Joshua was very close to finding that match at the end of last year, but the potential donor was not the perfect match Joshua’s doctors at Children’s would have liked to ensure a successful procedure.
Unfortunately for Joshua, the wait could be even longer because of his race.
According to Be The Match, “Patients are most likely to match someone of their own race or ethnicity. Today, there simply aren’t enough Registry members of diverse racial and ethnic heritage.”
How you can help
Adding more donors from diverse racial and ethnic backgrounds to the Be The Match donor registry increases the likelihood that all patients will find the match they need. So, if you are from one of the following communities, consider joining the Registry to help kids, like Joshua:
- Black and African-American
- American Indian and Alaska native
- Asian, including South Asian
- Native Hawaiian and other Pacific Islander
- Hispanic and Latino
- Multiple race
You could save a life by going to marrow.org and ordering a donor kit. Children’s is covering the cost of the kit through the month of February when you use the promo code “childrens” when ordering.
There are too many people in the world for Joshua to be waiting for his perfect match. This is an irreplaceable gift – I hope everyone who reads this will register.