NAM Coverage

Sophia’s Hope: A Swab of The Inside of Your Cheek

Fifth-grader Sophia Tes is 11, likes to play with her dogs and ride her scooter around her Santa Rosa, Calif., neighborhood in her spare time. She also loves to roller skate.

Sophia is rather small for her age. She tires easily because not enough oxygen is being carried throughout her body by her blood. Soon after she was born, Sophia was diagnosed with the blood disease, Hemoglobin E-Beta Thalassemia. If left untreated, the disease could lead to changes in bones, severe enlargement of the spleen and liver and heart failure.

The blood transfusions she has two or three times a month forces her to take time off from school. Those transfusions, plus the daily medications she takes, ensure her immune system functions properly.

But a bone marrow transplant is Sophia’s only hope for her long-term survival. For that to happen, she needs to find a matching donor, and her best chances of finding one will be someone who is of Lao or Cambodian descent like her. Unfortunately, neither of her two siblings is a suitable match.

The Be The Match® national registry recruits hundreds of thousands of donors each year through an extensive network of more than 100 local and regional recruitment organizations. But there is an acute shortage of multi-ethnic donors on the registry, operated by the National Marrow Donor Program® (NMDP).

Those who are not Caucasians are more likely to die of leukemia or of other blood cancers.

“We need everyone of mixed race ancestry to step forward and join the marrow registry,” urged Carol Gillespie, executive director of the Asian American Donor Program. “When a marrow match is not readily available, patients have to wait longer than is ideal to find a match.” And when patients must wait, she said, their bodies become weak and may reject a transplant, once a marrow match is found.

And, Gillespie noted: “For thousands of severely ill blood cancer patients, there is a cure. It could be you.”

Time is of the essence for Sophia. Registering is simple. All it takes is a swab of the inside of your cheek. And you must be between 18 and 44 years old. You can do this with a home kit you can request from the AADP, or find a registration drive in your area.

“Sophia needs a marrow donor to give her a fighting chance,” said the young girl’s mother, Manyla Noy Isala. “For her father and (me), it is heartbreaking to know that help can only come from a single stranger. If everyone registered to donate, we know we could find that single person and help others find their match as well. Please help give my daughter the life she deserves."












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