As seen in the St. Paul Pioneer Press 11/22/15
Kyle Crawford was just 4 years old when his body began to fail him. His parents discovered their only child, who loved fish, sharks and whales, was suffering from severe aplastic anemia, a rare, life-threatening blood disease.
The boy who also loved superheroes needed a bone marrow transplant to survive.
Like most patients, Kyle did not have a donor in his family. He was at the mercy of strangers. So his parents, David and Angela Crawford, turned to Be the Match, the international bone marrow registry based in Minneapolis.
For 25 years Be the Match has delivered cures for leukemia, lymphoma, and sickle-cell disease, as well as less common diseases that involve bone marrow, the immune system, and more. Its global transplant network includes more than 600 centers in dozens of countries. Working together, personnel strive to connect patients like Kyle with strangers who donate bone marrow or peripheral blood stem cells.
Be the Match is always looking for new donors (particularly people of color, due to the genetic diversity of each group) but stresses that joining the registry is a commitment. People should not join on a whim. Locating and facilitating matches are time consuming and costly, and patients count on donors to follow through. If a donor changes his mind a patient might lose her life.
A patient’s likelihood of finding a donor match on Be The Match Registry ranges from 66 percent to 97 percent, depending on race and ethnicity. A simple cheek swab is typically used to test human leukocyte antigen (HLA) for compatibility.
Though many HLA markers make an individual’s tissue type unique, certain inherited markers are critical to a successful transplant. Therefore, patients are most likely to match donors who share their ethnicity. Blood type is not a factor.
Angela and David Crawford soon discovered that their search for Kyle’s donor was complicated because he is half Chinese and half Caucasian. Desperate to find a donor, Angela enlisted the help of Kyle’s preschool teachers and conducted registry drives in the San Francisco area they call home.
Utilizing traditional and social media they educated the public about the need for non-Caucasian donors to join the registry. The “Kyle Needs You” initiative netted 2,500 ethnically diverse donors.
Lieutenant Kawika Segundo joined the C.W. Bill Young Department of Defense Marrow Donor Program in 2009. Currently administrative department head for the Naval Health Clinic in Annapolis, Lt. Segundo completed three tours of duty in Iraq as a medic. He was injured during his second tour, while supporting the U.S. Marines ground combat forces near Baghdad and Fallujah. He refers to his Purple Heart as his medal for “running too slow.”
In 2014 he received a different call to serve, one he accepted without hesitation. Five years after he joined the registry he donated bone marrow to Kyle. Although the procedure required a short stay in the hospital and a few days of recovery, the 43-year-old lieutenant says the joy and pride that came from knowing he was saving a life outweighed any discomfort he felt.
Encouraging others to join the registry, he offers this perspective on the experience. “I equate it to me giving a single dollar — and that dollar is worth a million dollars to the person receiving it and the parents and loved ones who so dearly love that person.”
Nearly a year after his transplant Kyle returned to school after an experience his mother describes as “hell,” for the patient’s experience is far more grueling and risky than the donor’s. Now healthy, Kyle rides a bike and plays sports. He loves fishing with his dad and hopes to cast some line with his donor some day.
Earlier this month Be the Match held its annual national marrow donor program council. Each year the conference concludes with a first-time meeting between a donor and recipient and a keynote address (I was the speaker this year).
The donor/recipient meetings are always emotional events for the people who serve in a variety of roles to bring about life-saving transplants. Anticipation grew as the time drew near for the two families who had traveled to Minnesota from their respective sides of the country to meet.
After the families exchanged hugs and tears Kyle’s father, David, offered heartfelt thanks to Kawika Segundo, whose parents had traveled from Hawaii to share the moment with him. “You’ve given us back our son and we will be forever grateful, ” he said.
Angela echoed her husband’s sentiments, noting that being grateful has helped them to stay happy and focused on what truly is important in their lives. “You are an incredible human being with a heart and soul of a true hero,” Kyle’s mother said. “Thank you for you giving us a life with our son and thank you for confirming our hope in the goodness of humanity.”
Addressing the audience of more than 1,100, the lieutenant said, “There are many heroes in this world. Those who work behind the scenes that make this happen that affect so many lives. Thank you for what you do. I really appreciate it. Keep doing it.”
The video that shared their back-stories, their embraces and their tears were moving. But when the tall man in his blue dress uniform went down on one knee and looked the transplant survivor in the eye, he drew gasps and tears from the audience.
Describing Kyle as “a true warrior,” the lieutenant pinned his Purple Heart on the little boy who, though oblivious to its origin, was mindful that his new friend had just given him another very special gift.
Now that’s a superhero.