Liam Balow’s family moved from Colorado to Minnesota to save his life.
“Originally we were deciding if we were going to split up and have … just me and Liam come out temporarily for the time being of the transplant,” said Xandra Towndrow, Liam’s mother. “Eventually we decided that we would all just relocate out to Minnesota versus splitting up.”
Balow, 10, was born with Fanconi anemia, a genetic disease that, according to the Fanconi Anemia Research Fund, leads to issues repairing DNA, which in turn leads to greater likelihood of cancer and bone marrow failure. Though Balow was initially healthy, after getting COVID-19 in August 2021, his hemoglobin numbers dropped, and his family discovered he was in bone marrow failure.
“He was definitely very sluggish and lethargic when he was in bone marrow failure,” Towndrow recalled. “He was bruising very easily at times – he would get bruises for like no reasons, his bruises would stay for a very long time. He had to have blood transfusions every two or three weeks up until (his) transplant, so he was surviving off of transfusions from August until ultimately June of 2022.”
The transfusion process, said Towndrow, took “pretty much a full day at the hospital.”
The move to Minnesota – which was done so that Balow could be in an area that was able to handle a transplant for Fanconi anemia – was financially taxing. Balow’s father, Towndrow said, had to stop working to focus on his health care and doctor’s appointments. However, NMDP, a nonprofit headquartered in Minneapolis that focuses on blood cancers and disorders, was able to provide financial assistance, as well as match Barlow with a bone marrow donor through its registry.
“The grants that we received (from NMDP) helped with rent a few times, just random things that we needed, like utility bills,” said Towndrow. “Being able to receive those grants throughout the process allowed us to just focus on Liam’s care and not necessarily have the stress added on for how we were going to make rent or if we had to worry about somewhere to live on top of making sure that he was healthy.”
“Philanthropy … allows us to provide grants to patients for things like transportation, housing, out of pocket costs (and) co-pays, ” said Joy King, chief advancement officer at NMDP. “You name it, we help remove the barrier.”
After receiving a bone marrow transplant in Minnesota in 2022, Barlow is, his mother says, “a normal 10-year-old,” who enjoys hanging out with his friends, and who, a “couple of weeks ago,” said that he could “walk so far” without getting tired.
NMDP, formerly known as the National Marrow Donor Program and Be the Match, among other names, was founded by the Graves family in Colorado. In 1979, Laura Graves was, said King, “the first person in the U.S.” to receive an unrelated donor’s marrow to treat her leukemia. While the transplant was successful, Laura passed away a few years later as the result of a relapse.
Renamed NMDP in January, the organization continues to maintain and expand its donor registry and conducts research regarding transplant outcomes. The organization aims to make donation and transplantation financially viable for donors and recipients through granting financial support to patients and their families, along with covering costs associated with donation.
Peripheral blood stem cells, umbilical cord blood and bone marrow are donated to people with blood cancers or blood disorders to replace unhealthy cells. Donor matching is determined based on how closely eight protein markers on the outside of cells – eight human leukocyte antigens or HLA markers – match, with eight out of eight being a perfect match. According to NMDP, transplants from younger donors are more likely to be successful, and they focus on recruiting people aged 18 to 35 to join the registry.
Despite the fact that these markers are inherited, 70% of people who need transplants will not be able to find a match within their family, which means they’ll need an unrelated donor. This is where NMDP comes in – to find that donor in their registry or in a partner registry outside the U.S. within NMDP’s global transplant network.
NMDP has dedicated efforts to increasing the diversity of its registry, as people who have the same racial and ethnic background are more likely to share HLA markers. Currently, however the likelihood of finding a perfect match differs by race and ethnicity, with white patients having a 79% likelihood of finding a matched donor compared to 60% (Native American patients), 48% (Hispanic or Latino patients), 47% (Asian or Pacific Islander) and 29% (Black or African American patients).
“Liam is American Indian, African American, Mexican and white. So he has a very diverse background,” said Towndrow about her son. “We were worried … with having so many different ethnic backgrounds in his history that we weren’t going to be able to find (a donor).”
“We’ve become a much more diverse population,” said Dr. Heather Stefanski, vice president of clinical services and Center for International Blood & Marrow Transplant Research (CIBMTR) at NMDP .“It’s harder to actually find a match on the registry. We had to be able to sort of break this HLA barrier.”
To break the barrier, NMDP began a clinical trial in September 2021 to determine the effectiveness of transplants where the donor shared less than eight HLA markers in common with the recipient. Though time is still needed to analyze the outcomes of the trial, which closed in January, the results so far are promising, as patients were able to have successful “mismatched” transplants with the use of a post transplant drug to prevent the patient’s body from rejecting the transplant.
Being able to match patients with “mismatched” donors, Stefanski said, would increase a patient’s likelihood of finding an acceptable donor. By going down from an eight out of eight markers in common to a seven out of eight match for a transplant, for example, said Stefanski, an African American person’s odds of being able to find a donor would go from 29% to 84%.
“If we registered every African American in the United States, (who) was 18 to 35, for example, we still wouldn’t have had a perfect match for every patient that needed it,” said Stefanski.
“By doing this and learning that it’s safe now (to move forward with transplants from donors who are not perfectly matched with recipients), we’re able to really help a number of patients that wouldn’t have been helped before.”
And for people living with blood disorders like Liam Balow, having that chance can make all the difference. “I don’t know the person that did this for Liam and they don’t know the 8-year-old (now 10) that they saved, but … being able to come together and save each other in such a small way is such a big, impactful thing,” said Balow’s grateful mother.
Deanna Pistono
Deanna Pistono is MinnPost’s Race & Health Equity fellow. Follow her on Twitter @deannapistono or email her at dpistono@minnpost.com.
