May 17, 2013
Julie and Brandon Williams are high school sweethearts who imagined they would have the “perfect little family” in the small town of Milaca, an hour from the Twin Cities. Julie is a special education program supervisor and Brandon a bus mechanic for the St. Francis School District.
Life seemed to be on track when Julie gave birth to their son Luke in July of 2005. Luke was a happy, personable, and healthy baby until he developed a respiratory illness in February 2006 that landed him in Children’s Hospital of Minneapolis.
Testing revealed Luke was dealing with more than RSV. Three weeks after his admission he was diagnosed with Myelodysplastic Syndrome (MDS), a rare disease in which the bone marrow produces insufficient healthy blood cells. Luke’s condition was severe enough to require a bone marrow transplant.
With no familial match, the Williams turned to the National Marrow Donor Program, based in Minneapolis (http://www.nmdp.org). NMDP matches patients like Luke with unrelated donors whose HLA tissue type is as close a match to that of the patient as possible. Blood-forming cells can be taken from umbilical cord blood or collected from either bone marrow or peripheral blood cells then introduced into the patient’s bloodstream.
It was a few weeks before the Williams family received welcome news. A mother had donated umbilical cord blood that could be used to treat Luke’s disease.
In early April 2006, Luke was admitted to the University of Minnesota Amplatz Children’s Hospital for the transplant. Five months later the family returned to Milaca to commence “their new normal.”
Three years after Luke’s diagnosis, Julie delivered a baby girl they named Molly. At her two-year check-up Julie asked to have Molly’s blood checked, for her mother’s intuition told her something was amiss.
A few weeks passed before Julie and Brandon received unfathomable news: Molly suffered from the same rare disease of which Luke had been cured.
Since her big brother could not be a donor, the Williams’ turned to NMDP once again. Another guardian angel came to their rescue. Exactly five years after Luke was born, the Williams family returned to Amplatz Children’s Hospital and went through the grueling process all over again with Molly, using umbilical cord blood from a different donor. Like her big brother, Molly was cured of MDS.
Since its inception in 1987, NMDP has facilitated more than 55,000 transplants by connecting donors with recipients through its Be the Match program. Today, it facilitates more than 5,800 transplants per year. Though the registry has grown to include 21 million donors and 185,000 units of umbilical cord blood, more are needed to meet the demands of the high percentage of patients who do not have a matched donor. There is an especially urgent need for people of color to join the registry. Patients are most likely to match donors who share their ethnic or racial background.
The process begins with a cheek swab. If matched with a patient, registrants undergo a physical examination to ensure the donation is safe. The doctor will select the donation method based on what is best for the patient. Whether the transplant uses peripheral blood stem cells (a nonsurgical procedure involving the removal of blood) or bone marrow (an outpatient surgical procedure involving the withdrawal of liquid marrow from the pelvic bone), the donor’s blood or marrow levels return to normal within four to six weeks.
Most unrelated donors are between 18 and 44 years old because studies demonstrate their cells lead to more successful transplants. Laura Gintant of Brooklyn Center joined the registry at age 24 to honor a friend who succumbed to cancer. A few months later, she was shocked and surprised when she received a phone call informing her she was a match for a 3-year old cancer patient named Owen.
Laura had never had surgery so she was a bit fearful of the process. But she went to the hospital, had her marrow extracted, and was home that evening. Though she was a bit sore, she returned to work a few days later.
Following her example, about a dozen people she knows have joined the registry. She has also assembled a large group that comprises “Team Owen.” They will be at Lake Harriet Saturday morning to participate in the Minneapolis Be the Match Walk/Run, where Laura and Owen have connected the past couple of years. The event offers an opportunity to get some exercise, get educated on the process, sign up for the registry, donate funds to support the non-profit’s global initiative, and have fun (http://bethematch.org/).
Whether as a parent or a donor, being involved in the transplant process is personal and emotional. Julie is enormously grateful to the two anonymous mothers who opted to donate, rather than discard, their umbilical cords. Without their gifts, she and Brandon would not have Luke and Molly in their lives.
Laura feels honored to have been matched with Owen. It gives her great happiness, joy, and hope every time she gets an update on him or sees him. Being able to give Owen and his family the feeling of hope far outweighs the time commitment and discomfort she experienced in being his donor, she says. She would be happy to do it again.
Both women have a message for people who have not joined the registry: please sign up. Being a donor is a relatively small inconvenience for an immeasurable return.