Parents of Latino Boy With Rare Genetic Disorder Urge Others to Learn About Marrow Registration


When parents of Julian Morales found out that he suffered from a rare blood disease, they tried to find a donor for a marrow transplant. But after a year of searching, they are still looking for a match.

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After moving from Miami to Boston for a 3rd expert opinion, the six-year-old was diagnosed with Dyskeratosis Congenita (DKC), a genetic disorder that is causing his body to have trouble making blood cells. 

Dr. Suneet Agarwal, who works at the Boston Children’s Hospital, said the child's condition "is thought to be a rare disease – one in a million. “ 

Every three minutes, someone like Julian is diagnosed with a blood cancer – and for many patients, a marrow transplant is the only cure.

Julian’s parents, Marya Morales and Dany Morales are trying to raise awareness about marrow registration and donation processes. It's very easy to register through Be The Match, an organization that pairs people in need of a bone transplant with a donor. 

Malena Laughlin, a spokesperson for Be The Match, said, "For Julian, we have been looking for a match for over a year – 16 million people and no match for Julian." Laughlin claims there is a need for more Latino donors.

Patients are most likely to match the tissue type of someone who shares their ethnic background, and Julian and thousands of other Latino patients like him are unable to find a matching marrow donor for transplant.

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To learn more about Julian's story you can visit his Go Fund Me page here and to sing up for a registration kit to help children like Julian click here.