Patient with rare disease receives surprise visit from bone marrow donor
What would you say to the person who saved your life? A young man at the NIH Clinical Center faced this very question early in 2018 when he met the person who donated bone marrow to treat his life-threatening illness.
Jackson Taylor has been a patient at the Clinical Center since 2010, when he was just 10-years-old. At that time, he came to participate in a trial for patients with immunodeficiency diseases.
Over the course of several years, researchers at the NIH kept a close eye on Taylor's condition. His immune system did not function properly – he often had severe and frequent infections and illnesses. The care team eventually identified a defect in a gene called magnesium transporter 1 or MAGT1. In 2014, the research team made an even larger scientific discovery – they identified and named a new rare disease that affected Taylor and a handful of other patients. The disease is an X-linked immunodeficiency with magnesium defect, Epstein-Barr virus infection, and neoplasia – known as XMEN.
This previously unrecognized disease brought Taylor back in 2016 to enroll in a National Cancer Institute (NCI) bone marrow transplant trial.
"When Jackson was found to have rapidly expanding lymphatic tissues following exposure to Epstein-Barr virus, the need for bone marrow transplant became urgent," added Dr. Gulbu Uzel, an immunologist and staff clinician with the National Institute of Allergy and Infectious Diseases (NIAID).
While most people have Epstein-Barr virus already in their body, they'll never see side effects because their immune system keeps it under control. But for patients like Taylor, whose immune system is not working properly, Epstein-Barr virus would likely lead to cancers of the immune system.
"A bone marrow transplant is a potential cure for immunodeficiency diseases," said Dr. Jennifer Kanakry, one of Taylor's care providers from the NCI. During a transplant, a patient receives healthy blood-forming cells (stem cells) to replace their own stem cells.
Taylor turned to the NIH's Unrelated Donor Stem Cell Transplant Program. In 2017, nearly 30 unrelated donor transplants took place in Building 10, which was about 40% of all transplants done at the NIH that year.
Jennifer Wilder, primary coordinator for the program, works with patients' clinical research teams, the Clinical Center's Department of Transfusion Medicine and Be The Match – the manager of the largest marrow registry in the world.
She coordinates donor details, plans for the marrow harvest and schedules the patient's infusion of cells.
Taylor's transplant followed the usual pattern of the many research collaborations across the NIH: he was cared for by the NCI's Experimental Transplantation and Immunology Branch with involvement from experts at the NIAID and the Clinical Center.
In September 2016, Wilder found a match for Taylor. Sean McLaughlin, a 22-year old from New England, was willing to make a bone marrow donation and his blood type, among other factors, matched Taylor's needs. McLaughlin traveled to D.C. to donate his marrow Dec. 21, 2016 and it was infused into Taylor a few hours later.
"Going through a transplant is a process," said Kanakry. After his marrow graft was given that December day, "there is a long process of preventing graft versus host disease, preventing infection, waiting for the blood counts to come back up from zero and slowly building up an entirely new, healthy immune system."
The transplant, delivered by IV, may have taken only a few hours, but the story didn't end there.
According to the Be The Match bone marrow registry rules, unrelated donor transplants are anonymous to the NIH care providers and the patient for at least one year following the transplant. So Taylor and McLaughlin corresponded anonymously over the next year. The first letter they wrote was on the day of the transplant.
"I think in total we wrote about eight letters back and forth to each other," recounted Taylor. "Even though words on paper weren't fully able to express my emotions, it was extremely helpful to express my gratitude for my donor's sacrifice."
McLaughlin remembered, "I couldn't have been happier each time he sent a letter telling me how well he was doing. It made me realize that everything I did was worth it. It actually worked!"
On Jan. 5, 2018, they were finally able to meet face to face. Taylor was at the Clinical Center for his one-year transplant follow-up visit. But to his surprise, Wilder had worked with Taylor's transplant team, his social worker and his family to arrange for him to finally meet McLaughlin.
"I loved bringing the patient and donor together, and seeing the family's reaction was priceless," said Wilder. "It's also incredibly important to highlight things like this for our staff – the research teams as well as the Clinical Center staff who care for patients every day. I am really pleased that we could share a success story with them, and also highlight the donor in a way that made his sacrifice and gesture real to everyone."
The visit made a real impact.
"Meeting Sean, my bone marrow donor, was crazy largely due to the fact that I didn't know he was going to meet me in the hospital. When we came face to face, it was like meeting a long-lost brother I never knew I had. The amount of emotions was overwhelming, I wasn't sure what to say. Spending the day together and getting to know him was amazing," said Taylor.
"Knowing that there were two people in that room who had never met, but share the same DNA was a profound and amazing feeling," added McLaughlin.
Taylor's experiences haven't ended with meeting McLaughlin. A Canadian citizen, Taylor is now a volunteer for the Canadian Blood Services, the main organization that coordinates blood donations and recruits bone marrow donors in Canada. He plans to work on events that educate and inspire people to donate blood and register for bone marrow donation. "It really does save lives," he said.
As for McLaughlin, he found donating marrow to be incredibly powerful.
"For many patients, a bone marrow donation is the last resort or only option," he said. He encouraged others to join a donor registry. "Knowing that you are the only reason someone is alive is remarkable."