NILES, Ohio (WKBN) – When Aimee Cantola got sick in May 2011, she thought she had the flu.
After her health rapidly deteriorated, however, she knew something else was very wrong.
Aimee’s doctor diagnosed her with Alpha-1 Antitrypsin deficiency, a genetic disorder that causes liver disease. That meant she would be one of thousands of people in Ohio waiting on a life-saving organ transplant.
Luckily, Aimee was able to get a life-saving transplant within just a few days, but others don’t have that same experience.
Lifebanc estimates about 22 people in the U.S. will die each day because an organ isn’t available in time for a transplant. And while 95 percent of Americans are in favor of being a donor, only 52 percent actually register.
Gordon Bowen, CEO of Lifebanc, said he has to fight misconceptions that many people have had for years.
“There’s one about ‘my religion won’t support it,’ when all major religions support organ, eye and tissue donation. They think it’s a great, charitable thing to do at the end of your life,” he said. “The biggest one is the fact that, ‘If I register to be a donor, and I go into the emergency room because I was injured… the doctors and nurses, if they see I’m a registered donor, they won’t try to save my life,’ and really, Lifebanc’s not involved until that death has occurred.”
Bowen’s challenge is now reaching out to younger people, who may not know that they can become an organ donor.
Most people are asked whether they want to become an organ donor when they register for a driver’s license at the Bureau of Motor Vehicles. You can register as an organ donor at any age in Ohio, but your family does have the final say if you’re under the age of 18 (laws differ from state to state).
“More and more of the younger population is doing it electronically through Facebook and other opportunities now,” Bowen said. “We’ve also done studies in Ohio that 90-plus percent of Ohioans think donating is a great thing to do, however… everyone does not register when they get their license renewed. Plus, a lot of people don’t go to the BMV.”
Bowen said because of this, there is a big effort to reach more potential donors.
More recently, Donate Life America has partnered with Apple to allow iPhone users to register as an organ, eye and tissue donor through its iOS 10 operating system. All registrations are submitted directly to the National Donate Life Registry managed by Donate Life America.
Hillary Czarda, Donate Life America spokeswoman, says the organization has additional outreach efforts targeted specifically to millennials, including the “World’s Biggest A*shole video,” the “Give Me a Heart” Instagram-based campaign and “Your Name Saves,” a digital interface that allows people to plug in their names and see the names within – a metaphor of how one donor can save and heal many lives.
“Really, the fastest-growing group on the Ohio donor registry are the 15- to 24-year-old group,” Bowen said.
According to Lifebanc, one organ donor can save eight lives, as was the case with Aimee’s donor.
Al Cantola, who watched his wife Aimee go through her debilitating illness, has made it his goal to educate others about why organ donation is so important. Al almost lost Aimee, if not for that one special donor.
Now, the two speak at Lifebanc events, put up signs and billboards and talk to friends and family members about the importance of registering as a donor.
Al said he doesn’t understand why someone wouldn’t register.
“You can do so much with the loss of one person,” he said.
Aimee added, “It means the world. It meant that I was able to see [my daughter] graduate from high school, because she was still in high school. Our daughter got married. I mean, those are the things that I would have missed out on.”
Bridget Gaugler’s sister, Amy Spisak, registered as an organ donor. Gaugler said it wasn’t surprising, given her sister’s giving nature.
Amy committed suicide in April of 2015. Bridget said her sister, Amy, was a kind-hearted person, always thinking of others.
While Amy’s death was tragic, Bridget said her sister’s organ donation also brought her some closure.
Amy’s heart went to a 41-year-old woman with three children, a letter from Lifebanc to Bridget’s family said.
“It’s a good thing. When I got that letter, I cried, because it’s a sad day, but it’s also a good day because her heart, which was the biggest part of her, and all that kindness came from her heart, her heart is still beating, it’s just beating in somebody else,” she said. “So part of her is still alive, and I really feel like that gives me comfort to know that, and it gives my parents comfort to know it too.”
As for Al and Aimee, they had their three kids tested for the gene that causes Alpha-1 Antitrypsin deficiency. Their son has the gene.
Sometimes, the deficiency presents no real problems. But they hope, if he ever does need a transplant, that there will be a donor.
For more information on registering, go to www.lifebanc.org.