Roman Shen is a happy 2-year-old. You wouldn't know it, but he suffers from Shwachman Diamond Syndrome, or SDS. That means his bone marrow doesn't work properly and doesn’t make its own white blood cells.
The right bone marrow donor match has been hard to find.
“Mostly because he is mixed race, Chinese-Italian, and they are underrepresented in the bone marrow registry," said Nicole Shen, his mother.
Mixed race people are 4 percent of the bone marrow registry. So for the past 2 years, Roman’s parents have been actively involved with the registry, launching and participating in Be the Match registration drives.
“It takes about 10 minutes. You swab the inside of your cheek. You could save my son's life or someone else's life," Nicole Shen said.
Why is race so important to marrow donation?
“You're matching antigens that are produced by your stem cells and those are in many cases matched to ethnicity," said Be The Match spokeswoman Felicia Gann.
One in 540 registrants will end up being a match. Donors give either with platelets, which are given much like a blood donation or with actual bone marrow, removed from the hip bone via needle. Bone marrow transplants are used to treat over 70 diseases.
The Gulf Coast Regional Blood Center houses the Gulf Coast Marrow Donor Program (GCMDP) and is an accredited donor center for the National Marrow Donor Program (NMDP) which operates the Be The Match Registry. For more information, contact the GCMDP at (713)-791-6697.
To register as a potential marrow donor, you must be 18 to 44 years old and in general good health. Registration takes 10 minutes and involves completing a form and a cheek swab with a Q-tip.