Real Stories from People Living with Sickle Cell Disease: Vera
“I test every Black woman for sickle cell, and I test every White woman for hemophilia.” That was what Vera’s doctor told her during an appointment when she was pregnant with her son, Joshua. Her results came as a complete surprise. Vera was a carrier for sickle cell disease (SCD). She was shocked and in denial. No one in her family had SCD and she had lived her whole life not knowing that she had sickle cell trait. “Why didn’t someone else tell me before now? If I was a carrier, I should have known,” shared Vera as she recalled how she reacted to the news that day.
Joshua’s Diagnosis and the Physical Impact of SCD
When Joshua was born, his newborn screening results showed that he had one of the most severe forms of SCD, sickle cell anemia. Sickle cell anemia happens when two sickle cell genes are inherited, one from each parent. Vera wasn’t too concerned about Joshua’s diagnosis at first. “When I first got the news, it was just one of those things that I thought I would just need to follow up with. I didn’t know much about it. I was a licensed practical nurse, so I knew of the disease, but I wasn’t aware. I didn’t know it would cause this kind of damage,” said Vera.
When Joshua was 3 months, he experienced his first severe pain episode. His hands and joints were swollen, and Joshua wouldn’t stop crying. Vera didn’t know what was wrong. She took him to the hospital where doctors told her that Joshua was experiencing a pain episode, which occurs when sickled cells stick together and block blood flow in the body. Joshua was given a blood transfusion and medication for his pain. This was when Vera realized that SCD was a serious condition that can cause health problems. “As a mother, you don’t want anything to happen to your child. From that moment on, I started following up and doing research.”
At 12 months, Joshua underwent surgery to remove his spleenan organ located above the stomach, under the ribs on the left side of the body that filters bacteria out of the blood to help the body fight infections. In children with SCD, the spleen does not function well after four to 6 months of age. At 18 months, Joshua got sick and was taken to the hospital. On the third day of his hospital stay, he experienced a severe stroke from his SCD. The stroke left Joshua partially paralyzed with hemiparesis (weakness or inability to move a part of the body) in his right thigh. As a result, Joshua uses a wheelchair and is not able to use his right hand freely.
The Search for a Bone Marrow Donor
Since his stroke, Joshua has been on the Be The Match Registry for a bone marrow transplant (also known as a stem cell transplant), which could potentially cure Joshua’s SCD. Bone marrow is a substance found in the center of the bones where blood cells are made. A bone marrow transplant replaces unhealthy blood stem cells (special cells that develop into different types of blood cells, such as red blood cells) in the bone marrow with healthy blood stem cells from a matched donor (a person with similar, compatible bone marrow as the recipient). In people with SCD, their bone marrow makes abnormal, C-shaped red blood cells; but after a bone marrow transplant, their body may potentially be able to make healthy red blood cells.
“We are in search of a bone marrow donor. He’s 14 years old now, so can you imagine how long we’ve been waiting to get a match? The process started when we were living in Texas and continues here in Georgia. We’re trusting in God that he will send somebody our way to be able to donate to him,” shared Vera.
Unfortunately, none of Joshua’s family members are a match and cannot be a bone marrow donor for him. They must look outside of their family for a donor. “We try to reach any platform we can to raise awareness and find a match for Joshua,” said Vera. Many people and organizations have helped Joshua and his family with their search for a donor. Be The Match has been a source of support for the family. Representatives have helped to host and promote several drive-thru cheek swabbing events to help find a potential match for Joshua. Local television stations and newspapers have interviewed Joshua and Vera to help spread the word about these events. They have also been featured on Good Morning America, a national television show, to help raise awareness about Joshua’s SCD and his search for a bone marrow donor. Milwaukee Bucks player Jrue Holiday, who learned about Joshua’s story, helped spread the word about getting tested to be a potential bone marrow donor. In Georgia, Gwinnett County Commissioner Marlene Fosque declared July as African American Bone Marrow Awareness Month in support of Joshua’s search for a donor. “As a mom, it’s a tough thing to watch and just wait and see if there’s somebody that’s going to match your child. It’s a waiting game.”
Challenges and Impact on the Family
One challenge as Joshua has gotten older is taking him places in his powered wheelchair. The powered wheelchair is heavy and big and will not fit in a regular SUV or van. One time, Joshua wanted to go to his school’s football game, but they needed to rent a wheelchair-accessible van. This was expensive because the rental company required a minimum rental of three days even though they only needed it for a few hours. “He’s getting to an age where he wants to be a little more independent” said Vera. Also, because of his limited mobility, Vera shared that it’s harder for their family to leave the house without a plan. “We can’t just jump up and go and do things like everybody else can because we have to think twice about how Joshua is going to be able to do it. Is he going to be able to go out on the beach? If we’re going to go to the beach, can we rent a [wheelchair-accessible] van so that he can travel? [We have to plan for] those little things that people take for granted [like the ability] to go to the grocery store. Sometimes, one person has to go and another person has to be at home to take care of him. Sometimes, we all go and manage somehow. It’s a difficult thing.”
Despite these challenges, Vera shared that she and her husband try their best to live a “normal” life, and as a family, they try to do a lot of things together. Joshua is “spoiled” by his two sisters because “they love him so much,” shared Vera. As a family, they love to spend time together and vacation. During one vacation to Myrtle Beach, Vera’s husband carried Joshua on his back so that he could touch and enjoy the water. Although Joshua can’t walk, Vera shared that he never feels held back by his wheelchair. “Joshua feels like he can do anything. He’s like, ‘mom, I want to be a football player. Mom, I’m going to be in the Paralympics!’ He’s just a positive child. He loves to play around and make you laugh. He loves life. He keeps us going.”
Advice for Caregivers with SCD
When asked what tips she has for other caregivers, Vera shared, “just keep doing the best you can do. These kids are special to us and God gave special children to special parents, and that’s my motto. So, just keep caring for them and your reward is in Heaven.”
CDC thanks Vera for sharing her story.