“Hope won’t save my life, but action will”

Posted December 9th, 2013 by Be The Match and filed in Patient Stories
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Nivia_203pxBy Nivia, a 16-year-old searching for a marrow donor

I was diagnosed with sickle cell disease when I was two weeks old. I’m 16 now, and even though I’ve been sick my whole life, I’m still a very hopeful person.

But the one thing I don’t hope for is a cure, because a possible cure already exists. It’s a bone marrow transplant. And I need one. For me, it could be a matter of life and death.

Unfortunately, I can’t find a marrow donor who matches my genetic profile. This isn’t right. But it’s not hard to fix. We just need more people of all races and ethnicities, including African Americans, to join the registry or to support the organization with a financial gift.

I’m doing all I can to spread the word. My mother and I have been organizing registration drives all over the San Francisco Bay Area. Even if I don’t find a match for me, I know I might be helping other people find the cure that could save their lives. Knowing that makes me proud to be of service to people like myself around the world.

I know how hard it is to wait, knowing there is a possible cure out there, but not being able to find it. Imagine if you or someone you loved was in the same position.

I have struggled throughout my life with my health because I’ve been in the hospital more than I’m home. I equally struggle to stay on track in school and do “normal” teenage things. Yet, my dreams outweigh my struggles because I’ve got big plans! I want to graduate from High School and go to Stanford University to become a Pediatric Hematologist-Oncologist. I want to see my little brother grow up, and I want to make my mom and dad proud. I’ve had these dreams for as long as I can remember and I plan on accomplishing them. I’ve always wanted to be a Pediatrician so that I can help children like me in the future and encourage them with my story.

But without a match, I might not be able to pursue my dreams. So I don’t need hope. I need action.

Take action to save a life.

Links

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African Ancestry

Patients are more likely to find donor matches within their own racial or ethnic background. For African Americans specifically, there is more genetic diversity than any other race. However, the number of black donors on the national registry is still low.

African Ancestry is partnering with Be The Match to drive awareness and registration among the black community for this important cause.  Learn more about African Ancestry and how they can trace your ancestry back to a specific present-day African country of origin.

Be The Match Foundation

Be The Match Foundationis the new name of The Marrow Foundation. Their work with families, corporations and other partners has raised millions of dollars for patients in need. With your support, Be The Match Foundation will continue to attract, engage and motivate people who want to save a life.

Center for International Blood and Marrow Transplant Research (CIBMTR)

CIMBTR Is a research partner of the National Marrow Donor Program committed to increasing application and access to cellular transplant therapy, as well as improving outcomes. The ultimate goal is to help more transplant patients live longer, healthier lives.

Hendrick Marrow Program

Rick Hendrick is best known for his NASCAR championships and Nextel Cup Series victories as the owner of Hendrick Motorsports. In 1996, his winning ways broadened beyond the Winner’s Circle when he became a champion for people facing life-threatening diseases that can be treated with a bone marrow transplant.

Hendrick Marrow Program of the Be The Match Foundation helps secure private resources to support the work of the National Marrow Donor Program (NMDP) and its Be The Match Registry.

Since 1997, the Hendrick Marrow Program has raised more than $7 million to recruit new members to the marrow donor registry and help patients pay for transplant-related costs.