For Sam: A Sister’s Aplastic Anemia Inspires a Movement Across America
March 3, 2016
In 2010, Sam was a seemingly healthy 17-year-old lacrosse player when she was admitted to the hospital because her blood counts were deadly low. Several tests and a bone marrow biopsy later, she was given the diagnosis of severe aplastic anemia or SAA. SAA is a very rare bone marrow failure disease where the body attacks its own bone marrow so the marrow slowly disappears and stops producing blood cells. At the time of Sam’s diagnosis she was given about 6 months to live.
Sam was told that she would need a bone marrow transplant to cure her disease, and that her older sister Alex had the best chance of being a matching donor because matching is based on DNA. Even though Sam and Alex often get mistaken for twins, unfortunately they were not a match for each other. They received more devastating news when they found out that no one out of the 25 million people on the international donor registry was a match for Sam either.
Thankfully, Sam is still here today because she was able to undergo an alternative immunosuppressive treatment similar to chemotherapy. Sam takes 25 pills a day to keep her SAA in remission, but the disease could come back at any time because she hasn’t had that bone marrow transplant that would cure her. Unfortunately, Sam’s case is not unique: over half of patients fighting diseases like SAA or blood cancers like leukemia and lymphoma are unable to find the matching donor that they need.
Fueled by the pain of not being able to be Sam’s donor, and knowing that there were thousands of other families out there also looking for heroes to join the registry, Alex hosted bone marrow donor registration events in her hometown of Louisville, KY and also at Western Kentucky University, where she went to school. Over the next 4 years, Alex, and eventually Sam when she became healthy enough, registered over 5,000 donors. But it wasn’t enough. With still no match for Sam, and the need for more donors for the thousands of other patients still looming, the sisters decided to do something big.
After hosting several successful donor drives at WKU, Sam and Alex had dreamed about traveling to other universities to raise awareness and sign up donors. In 2014, they decided to turn that dream into a reality and visit colleges across the country and host donor drives in all 50 states in 2015. The sisters, along with their best friend Taylor, created Sharing America’s Marrow, or SAM in honor of Sam. The girls decided to also go to concerts, sporting events, businesses, restaurants and anywhere else where they could register potential life-saving donors.
The SAM team took a huge wall map, pinned all the places they wanted to go, and took a big roll of yarn to connect the dots and form the route they would drive in 2015. They built a website to share their story and plans for the next year to gather supporters who could contribute financially to help make this trip possible, or who could help the team host an event in their local community. Sam and Alex both sold their cars so they could lease a cargo van for the year that would act as the mobile SAM headquarters. They also partnered up with a local advertising agency who designed their logo, signage, t-shirts, and the wrap that would go around their van (who they named Maggie).
After months of planning, fundraising, and promoting their 50 states in 2015 campaign on social media and in the news, the girls hit the road to find as many heroes as possible. Over the next year, the SAM team would host 193 events in 160 cities, registering over 18,000 donors. Registering donors is easy- all people have to do is fill out a consent form and swab the inside of their cheek to get on the list to potentially be called as a match. However, convincing people to register is difficult because there are so many negative misconceptions about bone marrow donation.
Many people think the process is very scary and painful, but in reality, most donors actually donate blood stem cells, which is done through a donation process similar to a longer blood donation. If the donor is asked to give bone marrow, the procedure is done under anesthesia so the donor feels no pain, but just might have some soreness in their hip for a few days. The SAM team tries to emphasize that it is so rare to actually be a match for a patient and to be asked to donate, but if you are called, you might be the one person in the world who could save a patient’s life. You could be the one person in the world that Sam has been waiting for to save her life.
Out of the 18,000 donors they registered in 2015, the SAM team has found 154 matches so far for other patients needing transplants.
They hope to sign up even more donors who could be the match for Sam or another patient in need. To learn more about SAM, please visit sharingamericasmarrow.com
*You must be between the ages of 18-55 to register.
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