When Aya, a 19 year-old college student, thinks back to elementary school, she remembers the experiences she missed. “I couldn’t go swimming, play in the snow, or participate in sports. I missed so much school.” Aya’s Sickle Cell Disease limited her activities. However, after receiving a life-saving bone marrow transplant, Aya is now disease free and an advocate for the transplant community.
Hakim and Tyrene, Aya’s parents, knew she was going to be born with the disease after tests during pregnancy confirmed the trait. Tyrene knew she wanted to find the right pediatrician for Aya, recognizing that her childhood would be spent managing the disease.
Aya's parents met with Dr. Bruce Terrin, a pediatric hematologist and Judy Solomon, a social worker, at what is now referred to as Hackensack Meridian Health Children’s Cancer Institute when she was still pregnant. “I met everyone at the clinic and I knew she was going to be treated here. I thought that they were very informative. Judy gave me literature and information and Dr. Terrin was very informative in telling me about her treatment and what to look out for,” Tyrene said.
Aya had her first pain crisis at age three. At first she had a crisis once or twice a year, however as she grew older she soon experienced them more frequently. Tyrene didn’t want Aya to be placed on maintenance medication. “I didn’t want that. I wanted her to have a transplant because I felt like [maintenance medications] were a temporary solution. I wanted her to be cured.”
Aya’s pain crises would cause her to be admitted to the hospital for extended periods of time, often resulting in her developing pneumonia from being in hospital bed for such a long time.
Dr. Jennifer Krajewski, a pediatric stem cell transplantation specialist at Hackensack Meridian Joseph M. Sanzari Children’s Hospital indicated that these frequent episodes served as an indicator that transplant was a good option. When Aya was 11, she recommended a bone marrow transplant. As Aya did not have a family member matching her, the donor would have to come from a registry search. “Unrelated donor transplants are trickier, and there is a higher frequency of complications. This is why we currently only offer this procedure to patients with severe symptoms.”
After a first donor didn’t work out, Aya was fortunate to find a match with Marc, a Caucasian man from Germany. “I would have never thought that a good match would have been a German male – you never know who you are going to help.”
Dr. Krajewski explained that donors are rated on an 8 or 10 point scale. Mark matched Aya as a 9 out of 10. “We were fortunate to identify a donor for Aya, as sickle cell patients find unrelated donors less than 50% of the time.”
Although her recovery had a few complications and lasted over a year, Aya is now living free from disease and is able to look forward with hope. “We are very thankful and grateful. Mark is a remarkable person,” said Tyrene.
When Aya was 15, she went to Germany with her school and was able to meet Marc and his wife, Sabrina. “It is so surreal to know that somebody helped me like that. He and his wife were so sweet. They were so happy that I was okay. Now they are like family.”
Aya’s experiences have shaped her tremendously. “I feel like it opened my eyes and matured me. 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.”
Currently, Aya is a student at Loyola University in New Orleans where she is studying biology with the hopes of becoming a pediatric hematologist, like Dr. Terrin. In fact, she is so inspired by his work, that she spent time this summer shadowing him and learning first-hand.
Dr. Terrin looks back at Aya’s recovery as remarkable. “She made it through much more smoothly then we expected.” He is confident that she will accomplish great things. “She’s a bright young lady. She has personal experience, motivation, and empathy – all important qualities in this field.”
Additionally, Aya is very involved with Be the Match, the largest online registry for bone marrow and stem cell transplants. Aya speaks with families to provide guidance, shares her story with others, and organizes donor drives. Aya is passionate for this cause. “It is so important for people to be in the registry. Knowing that you can change someone’s life like that is eye opening.”
Support to Tackle Kids Cancer’s Sickle Cell initiative will assist in furthering this mission, as well. Dr. Krajewski explained, “Education and awareness to providers and patients that transplant is an option and is open to more than just the most severe patients is very important. Funding to help us hold donor drives and increase the pool of donors is crucial. We need to have more minority donors in the registry.”