The family of a Pelham Bay baby girl suffering from a very rare blood disease is searching for a bone marrow donor to save the six month old’s life.
Precious Sophia, who her mother calls the little princess that she always dreamed of, is suffering from a rare, life threatening blood disease called hemophagocytic lymphohistiocytosis (HLH) that affects one in a million children every year.
After their newborn daughter was diagnosed with the deadly disease, Denise and Mike Lopez were devastated to learn that neither of Sophia’s older brothers were a match, and that a bone marrow donation would have to come from a stranger.
A bone marrow drive will be held for Sophia and others in need of transplants on Saturday, May 22 at P.S. 71, at 3040 Roberts Avenue, between the hours of 10 a.m. and 4 p.m.. The drive is sponsored by the DKMS America, an international bone marrow donor center that operates bone marrow drives all over the United States.
“I want my precious little girl to be saved,” said Denise Lopez. “Sophia’s my only daughter. I want her to be able to play with her brothers like the way she did before. Before this happened, she was so happy, and loved to laugh. But now, she just cries in pain. It hurts me so much to see her like this. I want my princess to live. We need your help.”
Denise Lopez said that she first noticed the abnormality shortly after bringing her daughter to be vaccinated. Sophia would arch herself on her back, and her mother later learned that this is because HLH causes the liver and spleen to enlarge.
Denise and her husband Mike have a child who attends P.S. 71, and thought that the school was the perfect location for the bone marrow drive.
“We have been in the community for a long time, so I figured since people know me and my son from P.S. 71 that it would be a good place to have the bone marrow drive,” Lopez said.
Even though the odds of finding a match are long, the Lopez family is hoping that a match will come from the community. The genetic material in the bone marrow must be an exact match in order for a transplant to be successful.
“She needs a bone marrow transplant in order to survive,” stated Flora Mendoza of the DKMS. “Unfortunately, there are no matches for her on the national registry. She’s put an even further disadvantage because she’s more likely to find a donor of the same ethnicity, but there is shortage of Hispanics and other ethnic minority donors.”
Sophia Lopez is three quarters Puerto Rican and one quarter Ecuadorian.
Mendoza said that the testing for a match is simple and painless. A cotton swab is rubbed in the mouth of the donor, and then checked against a national data base that includes all of those looking for a bone marrow transplant. If there is not a match for Sophia, the bone marrow drive will still be a success because a match may be found for another patient in need.
