‘All these kids deserve a chance to live their lives’
“Learning that he would need a bone marrow transplant was probably just as scary as finding out he had leukemia. Not because of the procedure, but because you don’t know if you’re going to find a donor, especially within the Hispanic community.
“Joey’s dad is from Puerto Rico. So because I’m white and his dad is Hispanic, that meant his opportunity to find a donor was only about 20%. We went into this with our hopes very low.
“But after running the initial lab work to find a donor, we were blessed to learn that they found over 1,000 9-out-of-10 (human leukocyte antigen) matches and 10 10-out-of-10 matches in the country. That’s very rare because there’s a lack of donors in the Hispanic community. Therefore, there’s a lack of opportunities for these kids. We see so many kids up here who don’t have a good match. It almost makes me feel guilty that my son had so many matches. All these kids deserve a chance to live their lives.
“When you don’t know your donor — when it’s not a family member or a friend — you’re not allowed to see that person for a year. All we know about our donor is that she’s a 31-year-old female. That’s a very big deal to me because I’m also 31. It’s like she’s his surrogate mom. She is doing something for him that I can’t do. That’s so special and meaningful to me.
“We have absolutely no clue where she lives. She could be anywhere. For all we know, she’s our next-door neighbor. Joey’s hope is that she lives in New York City. He would love to take a trip there one day to meet her and thank her in person.”
— Jillian Presley (with son, Joey)
Joey underwent cranial and total body radiation prior to his transplant on Jan. 25. Because of some complications, he remains at Texas Children’s Hospital. “We’ve been told so many times that they’re going to get us out of here in the next two weeks, that I don’t pay attention to that anymore. One day, it will happen.”
Every year, thousands of people of all ages are diagnosed with leukemia and other life-threatening diseases. Many of them will die unless they get a bone marrow or cord blood transplant from a matching donor. Seventy percent of people do not have a donor in their family and depend on the Be The Match Registry to find a match to save their lives. Jillian urges everyone who can to register to be a donor at BeTheMatch.org.
(Note: Joey Santiago passed away on May 29, 2019.)
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