I am a 13 year old living in North Carolina, and currently battling a blood disorder called sickle cell anemia. Unfortunately, sickle cell can be very painful, and a stem cell transplant is my only chance at a cure.
No stem cell donor is available for me in any of the global marrow donor registries. I learned that ancestry and ethnicity play a crucial role in finding a match, so my family is working with a nonprofit called Marrow Mates to reach out to genetic relatives to spread the word about my need for a stem cell donor. It is extremely hard reaching out like this, but I am doing all I can to find my match.
I am sharing a personal video and a link to a news story about me from ABC News 12. I’ve also included a link to the non-profit “Marrow Mates" website and their “Join A Registry” link, where you can find out more about registering as a potential donor.
My personal story: https://youtu.be/7Tm__yIjlTg?si=uf9Gwdc-9YUFi9f5
ABC News 12 interview: https://wcti12.com/news/local/sickle-cell-disease-impacts-thousands-including-10-year-old-havelock-boy
Marrow Mates: https://www.marrowmates.org/
Marrow Mates Global Registry list: https:https://www.marrowmates.org/Mentor-Program/Join-A-Registry
People of African descent and mixed ethnicities are extremely underrepresented on the global registries, so if you or anyone in your family were to find themselves in my situation, it would likely be difficult for them to find a donor too. We need to increase the number of people of our ethnicity on the global registries to help save lives!
I'm genuinely grateful for any interest and support in sharing my story with other family members. I believe that the more people who are aware of my search, the closer I come to finding a matching stem cell donor and beating this painful disorder.
I hope to hear back from you soon, please feel free to ask any questions and I will do my best to answer them. If I am unable to reply to you due to being in the hospital for treatments, Marrow Mates will reply on my behalf.
All the best,
Thor