Did you know the African American community has the toughest time finding treatment for blood-related cancers? According to Be The Match.org, the world’s largest and most diverse listing of potential marrow donors, donating marrow can cure someone with sickle cell anemia or life-threatening blood cancers—someone like 3-year-old Judah Wilks.
When he was 11 months old, Judah was diagnosed with sickle cell anemia. A few months after his diagnosis, little Judah suffered a stroke—a side-effect of his sickle cell disease. Judah’s doctors are now pursuing a marrow transplant as his best chance for a cure, but first he needs a donor. Because he is adopted with no related siblings, his doctors must rely on the national Be The Match Registry to find a matching donor. So far, no match has been found.
When it comes to finding a bone marrow match, race and ethnicity are important factors. The tissue types used for matching patients with donors are inherited, so patients are most likely to find a match within their own racial or ethnic heritage. Although there are 9 million people on the Be The Match Registry, only 7 percent are African American.
To help spread awareness about the need for more African American donors, BlackEnterprise.com caught up with Judah’s dad, Bryce Wilks, to share his family’s search for a donor.
BlackEnteprise.com: Can you give us an update on Judah’s condition?
Wilks: In general, Judah manages his condition well. He has been able to stay relatively healthy with the help of blood transfusions, which he receives once every five weeks. However, he recently developed a very serious case of shingles that left his entire arm swollen and blistered, and he was hospitalized for nine days with pain and fevers. Any fever is a complication for Judah because with sickle cell, his immune system doesn’t function as well as someone who does not have sickle cell. Even when Judah is doing well, he is at risk for these types of complications and side effects.
What would you like potential donors to know about your family’s challenges thus far?
The logistical challenges of Judah’s care are difficult. For example, his most recent hospitalization caused both my wife and I to take off work, administer meds around the clock, and even infuse antibiotics through his port at home. But the bigger challenge is the emotional toll of seeing his pain and worrying about his future. Even thinking about a future transplant attempt is difficult, but we have great hope for the future that a transplant will be provided for him. Parenting Judah is a great joy that we wouldn’t trade for anything, but the complications his disease creates are tough.
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