MINNEAPOLIS (WCCO) — In many ways, Maly Lee and Mason are just like any other mother and young son. But in other ways, their relationship is very different.
Maly and her husband, Eddie, are part parents, part caregivers for their 20-month-old, who was born with serious birth defects and other issues, all related to a rare genetic disorder called Fanconi Anemia.
“He has this L-shaped arm because of that,” she said, “and he also doesn’t have a thumb.”
He has as many tubes and machines as toys. They can deal with all that, but they’re having a harder time dealing with the fact that he’ll almost certainly develop leukemia, and how difficult it is to find him a bone marrow donor, because he’s Hmong.
While 93 percent of white people can find a match, minority groups have more trouble. Sixty-six percent of African-Americans, 72 percent of Hispanics and 73 percent of all Asians, but for cultural reasons, the number of Hmongs is much lower.
“We’re fairly new to modern medicine,” Maly said, “and there are still a lot of people who are afraid about what that would cause to a person.”
Older sister Jiena also has Fanconi Anemia, and she did find a match. But Mason has not, so Maly has been out recruiting, on a Hmong radio station, in a Hmong newspaper and at a Hmong soccer tournament. Anything to give Mason a fighting chance.
“He’s still a kid,” she said, “and all kids deserve to have long lives.”
To register to give bone marrow, click here for more information.