Sharing America’s Marrow – Sam & Alex’s Story

Sam and Alex Kimura shared their story of finding comfort in a Ronald McDonald House and their mission to register bone marrow donors, at our Annual Meeting earlier this month. You want to be a part of what these girls are up to!

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Sam: My name is Sam Kimura.

Alex: And I’m her big sister Alex Kimura.

Sam: In 2010, I was a junior in high school, playing lacrosse and living a completely normal life. Because I played a contact sport, we thought all bruises I had were just a part of the game. Because I was a teenager, no one thought it was too strange that I slept all the time and didn’t have a lot of energy. It wasn’t until I had a high fever that wouldn’t go away, did we get concerned, and even then- we thought the worst that it could be was the flu.

After getting the results of my blood test, my doctor told me to go straight to the Children’s Hospital- something was very wrong. After days of tests, fluids, blood transfusions, and then finally a bone marrow biopsy, they saw that I had about 20% of the marrow of a healthy person. My body had attacked itself in a rare autoimmune bone marrow failure disease called severe aplastic anemia. I had dangerously low levels of red blood cells, white blood cells, and platelets.

Alex: As her big sister, it crushed me to see her going through this. She didn’t know this at the time, but they told us that if untreated, she would only have about 6 months to live. Luckily, they said a bone marrow transplant would cure her disease, and as her only sibling, I had the best chance of being a matching donor for her.

Because we look so similar, I thought for sure our DNA would match (which is what needs to happen to be a donor for a transplant). I got the call a few weeks later that would change my life and the rest of our lives forever- I was not a match. And Sam did not have a match out of the over 10 million people in the donor registry.

Sam: So that was hard to hear the say the least! Thankfully, they said that I had alternative treatment. I spent several weeks in isolation at Cincinnati Children’s Hospital and was in and out of treatment for the next several months.

Cincinnati Ronald McDonald House

 

Alex: As you can imagine, it’s hard enough seeing the person you love fighting for their life, and being miles away from home doesn’t make anything better. We were distraught, tired, scared; and then they said, “Do you want to stay at Ronald McDonald House?”

It was beautiful, clean, and full of extremely nice volunteers- people donating their food and giving you love, concern, and sympathy. Even though we stayed at the hospital most of the time, to have a place to wash our clothes, grab something to eat, and a warm bed when we traded times staying with Sam, all just a few steps away from the hospital- made all of the difference.

I’m sure you’ve heard it said before, but the Ronald McDonald House really was our home away from home, and we will be forever grateful for the staff, volunteers, and donors, who made the most difficult time in our lives just a little bit easier.

SAM blog

RMHCK Board Member Daryn Demeritt signing up.

Sam: Thankfully, I responded well to that alternative treatment. I still have to take about 25 pills a day to keep my disease in check, but I am still in remission. However, I have about a 50% chance of relapsing and needing a transplant.

Alex: Knowing that Sam still doesn’t have a donor, and that there are thousands of other patients out there, some of which we met at our time at the hospital and at the Ronald McDonald House, that need transplants and can’t find a donor- we knew we had to do something.

We started doing donor drives when Sam got sick and have registered over 7,000 potential donors since 2015- but it is not enough.

Sam: Along with our best friend Taylor, we created Sharing America’s Marrow (SAM) with the goal of registering 50,000 donors in 50 states in 2015. Starting in January, we will be traveling to all 50 states throughout the year, stopping at colleges, concerts, festivals, businesses, sporting events, and anywhere that lets us register donors. We will be sharing our story and raising awareness about the need for donors, while letting people know that bone marrow donation isn’t scary like everyone thinks it is- most times it is like giving blood or plasma!

Alex: To find out more about SAM, see our route, and learn how you can help us reach our goal of registering 50,000 life-saving potential donors in 50 states in 2015, you can visit our website www.sharingamericasmarrow.com.

Sam: Thank you RMHC for all that you do to help families like ours and for supporting our SAM campaign to save the lives of those fighting blood cancer and blood diseases.

Staff SAM

RMHCK staff signed up!

 



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