This Christmas, Give Julian the Gift of Life
This Christmas, Save a Child’s Life by Becoming a Bone-Marrow Donor
Seven-year-old Julian Morales has a rare genetic disease and is in need of a bone-marrow transplant. Finding a Hispanic matching donor has been a challenge.
When Julian Morales was three years old, he was diagnosed with a rare genetic disorder called dyskeratosis congenita, a form of bone-marrow failure in which the marrow does not produce enough blood cells. This condition is usually diagnosed by the low number of circulating blood cells in the patient, including red blood cells, white blood cells, and platelets.
“Although he is taking medication that keeps him stable, doctors say it will work for only around five years,” said Mayra Garcia, Julian’s mother. The truth is that his only hope for a cure is a bone-marrow transplant, which replaces the damaged cells with healthy blood stem cells from a donor.
However, Julian’s search for his perfect donor has been challenging because of his Hispanic ethnicity. Julian’s donor needs to match his DNA profile, which in this case is complicated firstly because there are fewer Hispanic donors and secondly because his mother is from México and father from Nicaragua, making it harder to get an exact match.
Throughout this difficult journey, Mayra Garcia has had the support of Be The Match, a nonprofit organization that manages the largest and most diverse marrow registry in the world and that for the last 30 years has been finding donors for thousands of people diagnosed with blood disorders like leukemia, lymphoma or multiple myeloma, among others.
According to Be The Match, only 7 percent of the more than 19 million registry members are Hispanic. As a result, Hispanic patients fighting blood cancer or blood disorders have only a 46 percent chance of finding a fully matched blood stem-cell donor compared to a 77 percent chance for those who are of purely European descent.
The organization has been educating people through donor campaigns. In fact, Mrs. Garcia has been campaigning with them, informing people about how they can save a life by joining the registry, while at the same time looking for a donor for her son.
She and her husband have already helped add 1,100 potential donors to the registry and even saved lives along the way—but Julian still hasn’t found his perfect match, not even his parents or little sister are a match. The reality is that 70 percent of people who need a bone-marrow transplant do not have a match within their family.
The family also launched a social media campaign to raise awareness of the importance of becoming a potential donor. “We started Swab to Save (instagram.com/swabtosave/) to help more families like ours. We do not want others to go through what we have gone through to save our son. The campaign has worked perfectly, and people have started to register faster and more easily,” Garcia said.
If you are Hispanic and want to help Julian or others suffering from similar conditions, visit join.bethematch.org/saveJulian and complete the online registration form. You will get a cheek swab kit in the mail to get a sample of your DNA. Then mail the kit back to complete the registration and wait to be contacted as a match, as there are chances you may become a patient’s best genetic match and perhaps his or her only hope for a cure.
Haz clic para leer en Español: Esta Navidad usted puede salvar la vida de un niño al convertirse en un donante de médula ósea
