Every year, about 10,000 people in the U.S. need a stem cell transplant but can’t find a donor.
The intense medical procedure, which can help those with leukemia, lymphoma, sickle cell anemia and other blood diseases, can save lives — but securing a donor can be like finding a needle in a haystack.
Be The Match is a nonprofit, national registry where people can sign up to donate their stem cells. More than 35 million people around the world have volunteered — yet only a small percentage of those donors are Americans, and even the registry admits most Americans don’t know it exists.
The mother of a 12-year-old boy with leukemia has set out to change that.
Mandy Goldman is a hairdresser who lives with her husband and four children outside Boston. She remembers the devastating day five years ago when doctors told her the chemotherapy they gave her son Mateo Goldman, 9 years old at the time, didn’t work.
“They told us that our only option of curing Mateo was a bone marrow transplant,” she says, a risky procedure that often involves a host of complications. But they had no other choice, she says.
The family got to work on the monumental task — finding Mateo Goldman a close enough match.
Linda Matchan first reported the Goldman family’s experience for The Boston Globe. In her research, she found “very, very few people” had any awareness of the need for bone marrow and stem cells donors. The awareness campaign around the subject is severely lacking compared to other campaigns like the importance of donating blood, she says.
“For example, there's a little boy right now in North Carolina named Thor Forte, who's 10 and has sickle cell disease. And he has been waiting for literally half his life, five years, for a donor to be available,” Matchan says. “He's a tough match, but they finally did find somebody. And then when the time came for the procedure, the person backed out. So two years later, the boy is still waiting.”
Fortunately, quickly after finding out Mateo Goldman didn’t match with anyone in his family, he was paired with a donor on the registry — from Germany. Mandy Goldman says Laura Sütterlin of Frankfurt “was ready to go” and donate, ultimately saving her son.
Mateo Goldman wrote Sütterlin, whose name he did not know at the time, a thank you note reading: “Dear Donor, thank you for giving me the bone marrow. You feel like you’re already part of my family,” he says.
And unlike usual Make-A-Wish requests, Mateo Goldman asked to meet Sütterlin in person halfway across the world. The trip to Germany was planned for summer of 2020 but has since been canceled due to the pandemic.
In 2019 when she was reporting this story, Matchan had a trip planned to Germany. She ended up meeting Sütterlin and hearing the story of how she became a donor. Sütterlin said she was at a sporting event with her husband when she got hungry and went on the hunt for some grub.
“Dear Donor, thank you for giving me the bone marrow. You feel like you’re already part of my family.”Mateo Goldman
Germany has a robust public service campaign to get citizens to donate bone marrow, Matchan says. So it came to no surprise to Sütterlin when she came across a kiosk to sign up.
“Just three months later, she got a call and an email from the registry saying that there is somebody in the United States for whom she could be a match and was asked if she would donate,” Matchan says. “A couple of days later, she went into the hospital and did the donation.”
Sütterlin’s stem cells then crossed the Atlantic Ocean, making their way to America during a snowstorm.
The cells started working in Mateo Goldman right away but not without some difficulties, Mandy Goldman says. He battled total body stiffness from graft-versus-host disease, a complication of the transplant.
“But, you know, Matteo's an amazing kid,” she says, “so through it all, he was smiling and making the best of it, even though he was suffering for a lot of the time.”
Two years later, in July of 2020, the cancer came back. But since Mateo Goldman’s first transplant, the science had evolved greatly.
So much so that his older brother, Leo Goldman, became a candidate to donate his cells for the second stem cell transplant.
“I didn't realize how I could get my brother's cells,” Mateo Goldman, now 12 years old, says. “Once that sank in, I felt that it would connect me and my brother more.”
Right before Christmas last year, the family got extraordinary news: Mateo Goldman had “zero cancer in his bone marrow,” Mandy Goldman says.
Now the mom of four is on a mission to raise awareness on stem cell donations and share the story of how it saved her son’s life.
“The amazing feeling Leo got from being able to be the person who saved his brother's life is something he's going to carry with him forever,” she says. “And even Laura [Sütterlin], she gave him three and a half years of his life that we get to spend with him. I just really want to educate people about how empowering it is to do something so incredible for somebody else.”
When she started talking to others to raise awareness, she was shocked to discover how fearful people were in committing to be a donor.
If people could see the trauma these patients go through — her son had a drain placed in his stomach, total body radiation, chemotherapy that left him head-to-toe in a skin-burning rash — she says then maybe they wouldn’t be scared to dedicate a small action for someone whose only cure is through a stem cell transplant.
“Once people are educated about how much of a difference it makes,” she says, “then I feel like they would do it.”
Click here to learn more about the Be The Match Registry.
This segment aired on February 5, 2021.