“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.

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

  1. Cassandra says:

    Hi Nivia,
    I am a black woman from Cleveland Ohio. I would like to see if I am a match for you. Whenever it’s possible, I am willing. So many people don’t realize that we have the key to saving someone’s life. I pray that you find a match, that your dreams become reality and that God blesses you even more than he already has. I am registered with ‘Be the Match’.

  2. Malinda says:

    Hi Nivia,

    Im hosting a drive in March and would love to tell your story. I pray that God provide you with a match.

  3. Marie says:

    Hello Nivia. Living with Sickle is very, very hard. My daughter has it to. We are looking for a match for her but we have not found one yet. Just like you, she would like a normal life. I will pray for you for your miracle. Stay strong, remember, you’re beautifully and fearfully made by God. Did you set up an online drive?


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