RICHMOND, Texas – Nicole and Peter Shen have to give their son, Roman, a shot in his leg every night.
It’s a lifesaving shot that builds the 2-year-old’s immune system.
“So, right now Roman makes zero white blood cells that fight off bacteria,” Nicole said.
Roman was born with Shwachman-Diamond Syndrome, known as “SDS.”
It’s a very rare disease -- there are only a couple hundred cases in the United States and a few thousand worldwide.
The adorable toddler has spent his life in and out of the hospital, constantly fighting to stay alive.
“It causes pancreatic insufficiencies,” Nicole said. “They don’t absorb food, only about 2 percent of food.”
[PHOTOS: Richmond parents search the world for bone marrow match for son with rare syndrome]
SDS causes all sorts of other health problems, too, including bone marrow failure.
The problem is: Roman doesn’t have a match.
“Texas Children’s Hospital ran him against the registry, and it came back with zero people in the world that match him,” said Nicole.
Nicole is white and her husband, Peter, is Chinese -- that makes finding a match for Roman even harder.
“Less than 4 percent of the registry is mixed-race, and my son falls into that mixed race category,” Nicole said.
Nicole and Peter spend all their free time trying to swab as many people as possible and get them signed up on the bone marrow registry.
It could save Roman’s life, and someone else’s life, too.
“Four hundred eighty people a day are diagnosed with a blood disorder,” Nicole said. “I am Roman’s mom, and I’m going to find him a match.”
To register, visit join.bethematch.org/teamroman.
For more information on SDS, visit www.shwachman-diamond.org.