From diagnosis to death, it took Sara Miller’s sister, Laura, three days to die. But it only took minutes for her family to announce a decision that could save someone’s life.
Miller, who grew up in Bayside, remembered her sister as bright and kind.
“She would sit with the person who didn’t have any friends at lunch and she would volunteer and help out people that didn’t have it as easy,” she said. “It made a lot of sense for her to be an organ donor. She was that type of person.”
In 2009, the 14-year-old old was given a cancer diagnosis on a Wednesday and declared brain dead that Saturday.
Her family made the hard decision to shut off her life support and, because she was under 18, declared her an organ donor.
Miller, 12 at the time, was determined to ensure that her sister’s legacy as a life-saver would endure. In that spirit, she spoke at driver’s education classes and formed a student organization as a freshman at Washington University in St. Louis.
A student movement begins
There, Miller paired with upperclassmen to create SODA, Student Organ Donation Advocates, and was surprised to see other students eagerly come aboard the platform.
“At WashU, we realized that we struck a chord because students were coming who had never previously expressed an interest in organ donation,” Miller said. “We were onto something and it was a shame that there wasn’t an organization like this at other campuses.”
Especially in Miller’s home state.
So she started SODA chapters at Marquette University and the University of Wisconsin-Madison, which formed strong bonds with Versiti, formerly the Blood Center of Wisconsin, and UW OTD, the UW Organ and Tissue Donation program.
When Carolin Toberna, the head of the UW-Madison chapter, first reached out to Carol Hay, the community outreach coordinator for UW Organ and Tissue Donation, Hay said she was happy that student activists were raising awareness of the issue.
“The Madison chapter has done an amazing job and they are holding about five to six outreach programs every semester,” she said.
Now she works with them to recognize living and deceased donors on Feb. 14, National Donor Day, and she also brings speakers to educate students about the organ donor process.
“Eighty percent of the people on the waiting list in the United States are waiting for a kidney transplant,” she said. “The second-most-needed (organ) is the liver.”
Hay said genetic diseases are a big reason people need organs. In addition, the prevalence of diabetes has caused the need for kidneys, while alcoholism and certain medications damage the liver.
Hay said nearly 3 million people in the state have registered as organ, tissue and eye donors, but about 2 million eligible donors are still unregistered.
In Wisconsin, 1,964 people need organs, Hay said. Nationwide, that number is about 114,000.
Hay used to be on that list until she received a kidney transplant eight years ago — an event she said changed her life.
“I really wanted to pay it forward because I felt so fortunate to have that life-saving gift,” she said.
Nine chapters and growing
There are nine SODA chapters across the country today: WashU, Marquette, UW-Madison, Quinnipiac, Central Connecticut, Missouri, Purdue, Notre Dame of Maryland and Prout High School of Rhode Island.
The chapters operate on a low budget of about $5,000 and are entirely volunteer-led.
Miller said there have been nearly 80 SODA events held that have reached more than 1,500 students.
At a recent SODA event called Perspective with Pizza, Marquette University SODA President Viabhavi Talati offered peers a chance to learn about organ donation and voice their concerns.
For many young people, organ donation can be a difficult topic to talk about because it forces them to consider their own mortality. But Talati said being receptive to organ donation can offer ordinary people the chance to do something extraordinary.
“I think we often go about our day not thinking so much about it,” she said. “(But) I think the biggest takeaway we want for our students is to be more educated and keep an open mind.”
Talati is a pre-med major who joined SODA partly because her friend was involved in the organization and partly because of her studies in biological sciences. So when the previous president graduated, Talati volunteered to step in.
Talati’s background in medical science has helped her clear up some misconceptions people may have about organ donation.
“One of the things that people often don’t realize is that only a very selected percentage get chosen for it because you have to pass on a certain way,” she explained.
Most people who become organ donors die in a hospital, where their organs can be recovered while they are still viable.
“Something as simple as organ donation really helps people when they really need it,” Talati said. “You don’t have to be even in the health care field to donate this big gift to someone.”
Almost 800 people in Wisconsin received that gift last year, according to Donate Life Wisconsin, and Miller said more 300 of the students reached by SODA have signed up to become organ donors.
“If you can educate someone when they’re 16 to 22 years old, they’re going to be dedicated to that cause for the rest of their lives,” Miller said, explaining why she’s focusing on reaching young people.
Plus, it’s convenient.
Donation registration can occur at the same time students obtain their driver’s licenses — they can simply check the box to register as a donor.
Miller said the goal is to make sure everyone understands they can make a difference, in the same way her sister made a difference for Trish O’Neill, the recipient of Laura’s liver who became a close family friend.
“We want to have every high school and college student across the country become educated about organ donation,” she said.
For information about becoming an organ donor, go to DonateLifeWisconsin.org.