Sharing America's Marrow

Because of the severity of Sam's prognosis, she and her family were told she would need a bone marrow transplant. Sam's sister Alex was tested, but heartbreakingly, she was not a match even though siblings are the mostly likely to donate.
11/07/2014 04:23 pm ET Updated Jan 07, 2015

In April 2010, 17-year-old Sam Kimura had a high fever that wouldn't go away, vertigo, chills, exhaustion and inexplicable red dots on her skin. After concerning blood tests and a bone marrow biopsy, Sam was diagnosed with severe aplastic anemia (SAA). SAA is a rare blood disorder with less than 900 cases per year in which the body's bone marrow doesn't produce enough new red blood cells, white blood cells and platelets.

Because of the severity of Sam's prognosis, she and her family were told she would need a bone marrow transplant. Sam's sister Alex was tested, but heartbreakingly, she was not a match even though siblings are the mostly likely to donate. The next option for Sam was the National Bone Marrow Donor Registry where 11 million people are signed up to be potential donors. But more bad news followed as not one person on that list turned out to be a match. "It was such a scary time for my family. Knowing that there wasn't a single match out there left us feeling hopeless," Sam said.

Then some good news made an appearance: Sam was successfully treated with an alternative immunosuppressive therapy at Cincinnati Children's Hospital. Currently, Sam still takes 25 pills a day to stay in remission. However, she has around a 50 percent chance of relapsing and needing a transplant.

"The guilt of not being able to save my sister has driven me to dedicate my life to finding a match for both her and the thousands of other patients needing bone marrow transplants," says sister Alex. The sisters have registered over 5,000 donors since Sam's diagnosis in 2010. But they wanted to take their efforts one step further. In order to find a donor for Sam and the six out of 10 patients fighting blood cancer who also are unable to find a donor, Alex, Sam and their best friend Taylor created Sharing America's Marrow (SAM).

SAM is devoted to signing up as many people as possible to the bone marrow donor registry by spreading the word across the country about the need and squashing the myths about the donation process. "We intend to turn regular people into heroes by giving them the opportunity to save a life," says Taylor. SAM will be hitting the road in January, traveling to all 50 states in 2015 with a goal of registering 50,000 donors.

Over the course of 2015, the SAM girls will be driving across the country, stopping at college campuses, businesses and everywhere in between, searching for heroes who are willing to step up and potentially save another person's life. All it takes to join the bone marrow donor registry is a quick swab on the inside of the cheek and a short consent form. They will be hosting donor registration events in 191 different cities across the country.

The SAM movement hopes to change the common negative misconceptions around bone marrow donation. In actuality, about 75 percent of the time, the process is similar to blood plasma donation. Otherwise it is an outpatient procedure done under general anesthesia. In short, it's not the scary bone marrow donation conventional wisdom would lead you to believe.

"Donating bone marrow is one of the coolest things you can do," says Sam. "You could be the one person in the world who could save another person's life." All potential donors who register with SAM will go to the Delete Blood Cancer DKMS donor center and be listed with the National Marrow Donor Program.

Sam, Alex, and Taylor hope that by sharing their story, they will not only inspire people to join the registry, but move other patients and survivors to share their stories of hope. "With any luck we will save thousands of lives after our year on the road. And that's just the beginning," says Alex. They intend to start a movement across the country that will continue until every patient finds the hero they need. Be on the lookout for the SAM van coming through your town in 2015. But in the meantime, please visit their website www.sharingamericasmarrow.com to find out how you can join the movement. "I would encourage everyone who can to sign up to the registry," says Taylor. "You could be a match for Sam or for someone else waiting for a second chance at life."