How has Judah’s disease prevented him from enjoying his childhood?
Judah’s disease has cost him a lot of time, time that could have been spent playing outside or with his brother. Last summer, he still had a central line that he couldn’t get sweaty or wet, so going outside or swimming was out of the question for most of the summer. This year, he has been dealing with his shingles scars, so he has to avoid the sun. Sickle cell always prevents him from going outside in extreme hot or cold temperatures, and in general, it stops him from having the experiences that many kids enjoy.
What advice would you give to someone, particularly an African American, who hesitates to join a marrow registry like Be The Match.org?
When I joined the Be The Match Registry® myself, I was impressed with how easy it was. The first step—the cheek swab, is extremely simple. I was contacted as a potential donor for another patient, and even the second step of further testing was easy. Be The Match sent me instructions for going to a local lab to complete the step.
For the last step, actually donating, which consists of a stem cell donation or bone marrow extraction, consider that Judah endured both of those at age 2 without any trouble at all. He routinely gets his blood work done while watching TV, and after his bone marrow biopsy, he was playing without pain the next day. Either process is a small inconvenience that could change Judah’s life, or that of another waiting recipient, forever.
What can people do to help spread awareness?
I’m a big proponent of using the platform you already have to help spread awareness. In my case, I work at a university, so I hosted a drive where I am already working. For someone reading this, they already have friends and connections and may work at a company, attend a church, or be part of an organization that would be a great fit for a bone marrow drive. Some people may be moved to go outside their comfort zone, but a lot of work can be done by informing the connections that you already have.
Please include any additional information you feel would help our readers understand the disease and the importance of marrow donors.
Judah’s story is miraculous. He was born in the Democratic Republic Congo, a place that doesn’t have any sort of bone marrow registry, nor does it have the medical facilities or medicines that he needs to fight sickle cell disease. He was brought into our family and has people in his life that are willing to take care of him and make sure he has every opportunity to overcome this disease. He is close enough to St. Louis to receive outstanding medical care, and he lives in an era of incredible research that delivers new methods and treatments all the time. The only thing holding him back from being healed is a matching donor, and that donor is probably out there. Judah and many others have everything they need except for a donor, and someone reading this piece could be that final piece a patient needs to experience a new, healthy life.
To learn more about how the transplant process works or to become a donor, visit Be The Match.org.