Imagine being given a second chance at life. Now imagine that chance did not come from a doctor, family member or friend, but a complete stranger. How do you begin to thank the person who was there for you in your greatest time of need? For Ezra, this is the question he and his family faced as they waited on stage at a gala to finally meet Luis, the young man who donated bone marrow to Ezra the year before, saving his life. Luis and Ezra had both been waiting for this day since the donation, but the journey that took them to their moment in the spotlight began years before.
Having empathy in loss
As a college student in 2008, Luis registered to be a bone marrow donor at a local drive held for a community member in need of a transplant. Though ultimately not a donor for that patient, eight years later Luis received a call saying he’d been found as a match for a young boy with leukemia. He never hesitated in saying yes, having also suffered from a personal tragedy; in 2006, Luis’s sister and her husband were killed in a devastating accident in Guatemala, leaving their family with an overwhelming sense of loss. “I know what it’s like to lose a sister and I can imagine [what] it would be like to lose your child, your brother,” he explained. “When the opportunity comes to do something for someone that you can do, it’s amazing. It really is.”
A life-altering diagnosis
Across the country in Denver, Colorado, 12-year-old Ezra had received unexpected news that would forever change his life. Coming home from a hiking trip, Ezra’s mother Cynthia noticed something off about her usually energetic son and decided to take him for a check-up. What was originally believed to be a virus turned out to be something they never could’ve imagined: on August 19, 2015 Ezra was diagnosed with leukemia and was admitted to the hospital shortly after.
Months of chemotherapy treatments passed and it was determined that Ezra’s only chance to survive would be to receive a bone marrow transplant from an unrelated donor. “I just couldn’t fathom that kind of loss, it was just too horrendous,” recalls Cynthia. With the knowledge that only 4 out of 10 patients receive the transplant they need, Ezra’s family waited anxiously for news of a matching donor.
Matched by fate and DNA
Finally they got what felt like the first good news since his diagnosis: a perfect match had been found and the anonymous donor was willing to proceed. “Getting through the other side of it and seeing him now, it’s a great feeling,” says Cynthia. “Ezra now has the opportunity to experience a full life of love and happiness.”
Fast forward to April 27th, 2017: Ezra and Luis were attending an event in New York City, where they had both been invited to meet each other for the first time. As they walked across the stage to greet each other, all questions of what they would say quickly faded as the two embraced in a hug. Their journey began as strangers, connected through genetics and fate, but now the two would begin a new chapter together as family. “I got a new brother now!” Luis exclaimed to the crowd, his arms around Ezra and Cynthia.
Every three minutes an American is diagnosed with a blood cancer like leukemia and for many patients a bone marrow transplant may be their only chance for survival. Bone marrow donation matches are found through the use of HLA markers in genes, some of which occur more frequently in certain ethnic groups.
Due to the unique nature of some of these traits, patients of certain backgrounds will have a more difficult time finding a match on the registry. In addition, certain populations face much higher incident rates of specific life threatening diseases/disorders. In the African American population 1 in every 365 individuals has sickle cell anemia, a chronic condition for which the only known cure is a bone marrow transplant. However, with African Americans only representing 8 percent of the bone marrow registry, patients from within that community face much steeper odds.
Through focused advocacy and public awareness we can increase the diversity of the donor pool and encourage all eligible individuals to join the cause. The first step towards changing the odds for blood cancer patients is simple; it starts with you.