SPRINGFIELD, Vt. – In 1979, Dr. Robert and Sherry Graves were inspired to create a national bone marrow donor registry after their 10-year-old daughter Laura was the recipient of the first ever bone marrow transplant from a nonrelative, to treat leukemia.
Called the National Marrow Donor Program, or NMDP Registry, the organization signed up 10,000 donor volunteers within its first year. Now, NMDP is the leader in unrelated marrow transplantation, and continues to develop new technologies, therapies, and services to improve the transplant process.
Most people are not familiar with NMDP until they or someone they know is diagnosed with a form of life-threatening blood cancer. That was the case with West Parker and her family prior to 2016, when her son Levi was diagnosed with aplastic anemia, a rare blood disease that causes the body to stop making enough new blood cells, and whose only treatment is a bone marrow transplant. Two out of every million Americans are diagnosed with the disease each year.
Levi was 21 at the time, active in golf and softball leagues, and a volunteer firefighter.
“He started having headaches, bloody noses, and his thyroid was declining,” recalled West. “He was on the highest doses of thyroid medicines, and was really advocating for himself, but he didn’t know what was going on.”
Levi’s condition continued to worsen, and his mother remembers how yellow his skin and eyes appeared. He felt fatigued all the time, and his heart raced. Ultimately, West insisted they go to the emergency room.
After receiving Levi’s diagnosis, the family began researching doctors who had experience with bone marrow transplantation, and it was her sister Samantha who found Dr. Joseph Antin at Dana Farber in Boston. West called and left word with the doctor’s office on a Friday afternoon, not expecting to hear back until the following week.
“I’m just a mom from small-town Vermont,” began her message, then she related what Levi had been going through.
“It was Friday, at 4:30,” West said. “My cell phone rang, and it was a Boston number calling me.” She was grateful and impressed that Dr. Antin had returned her call so quickly.
Dr. Antin told West he had conducted more than 100 bone marrow transplants, and assured her, “I will save your son.”
Levi received his bone marrow transplant on Aug. 25, 2016. His donor is a young woman named Anastasia from Munich, Germany.
“I am truly blessed that a selfless young woman from Germany was a match and willing to donate her bone marrow to save my life,” expressed Levi.
By his own account, Levi is currently thriving. “Since the transplant, I have been doing very well. I am a HVAC-R technician, engaged, own my own home, and have two dogs.”
One downside of the transplant for Levi is GVHD, a condition where the donated marrow sees healthy tissues in the body as foreign and attacks them. In Levi’s case, the organ being rejected is his skin, and the result could be fatal if he were to spend too much time in the sun.
As his mom put it, “If Levi’s in the sun too long, his organs could start to shut down.”
She worries about him working as an HVAC tech, but he assures her they take precautions when working outside. West admits Levi manages his disease well, and she’s proud of him for that. “He’s good with it,” she stated.
The Parkers want to raise awareness about the NMDP registry, and encourage and assist people who are considering joining.
A “registration and swab” event will be held on Saturday, April 20, at the Kindred Market (formerly Jake’s Market) at 181 South Street in Springfield. Attendees may volunteer to have a cheek swab taken, put their name on the donor registry, and await contact should a match come up. Marrow donors must be between the ages of 18-40, and West explained that, even once registered, volunteers can opt out due to scheduling or other conflicts.
Kindred Market will be hosting raffles and serving appetizers at the event, which runs from 10 a.m. – 1 p.m.