‘In sickness and in health’: As his ALS progresses, this Bradenton couple's love for each other remains strong

A lot has changed since Kevin Swan first got diagnosed with ALS eight years ago. He’s completely paralyzed and has lost his ability to speak. 

Now, he communicates through a computer.

"I'm basically Iron Man. I eat from a tube, breathe on a vent and type with my eyes," he said with the voice of the computer program.

Even though life with ALS isn't easy, Kevin refuses to let the disease win. Instead, he finds reasons to fight.
 
"I have always been a positive person,” he explained. “Success has always been a motivating factor in every aspect of my life. I won’t let ALS change that.”

Kevin and Shaina with their daughter, Elliot (A Life Story Foundation)

Kevin found his biggest motivator three years ago: the day he met his future wife.

"Shaina is the most giving, thoughtful person on the planet. Her heart is so big. I don’t know how it fits in her body," said Kevin.

Their relationship sparked online and a few weeks later, Kevin asked her out on a date. 

"He said, 'I want to tell you about my hot wheels.' I said, ‘Oh my gosh, you collect hot wheels. That was going to be a deal-breaker,’” Shaina joked. “But he was talking about his wheelchair and that he had ALS.”

“I didn’t look it up I wanted to meet him in person first,” she added. “We had already been talking so much. I knew him and I already loved him before we even met. So, it was natural."

Kevin’s diagnosis didn't stop Shaina from falling in love. Nor did the fact that she will never see him walk or ever hear him speak. Instead, Shaina said, they have a love language of their own. 

"He can’t walk into the room and put his arm around me and ask 'How was your day?' she explained. “So a lot of it is just by words. It’s just one like one little. He doesn’t say anything. He can’t even move, but he's still Kevin inside there.”

Kevin and Shaina Swan spoke to FOX 13 to talk about their love story.

“I see him rolling his eyes right now,” she said with a laugh. “That's that look right now.”

They have untraditional rules for an untraditional relationship. Shaina does the fixing, building and carrying while Kevin takes care of their schedules, appointments and online shopping.

"Kevin shows his love through shopping,” Shaina explained. “He’s always styling me up so any of my outfits, accessories -- they're all Kevin Swan."

However, they did keep one tradition. One year after their first date, Kevin and Shaina got married in a small courthouse wedding. 

"Perfect. The perfect day," Shaina recalled. 

About 30 days after their ‘I dos,’ their daughter Elliot Monroe was born. 

"Elliot has been an amazing addition. We are quite the dynamic family," said Kevin.

Kevin and Shaina Swan with their daughter Elliot

Those are the moments that Kevin lives for.

"There is a very specific point where you have to decide how you are going to take on the disease,” Shaina said. “A lot of people let ALS win. But we still get up every day and go at it.”

It’s a choice Kevin now makes for himself and his wife and daughter. 

"I think thoughts are things,” Kevin said. “It's not easy but I do think it is so important to find reasons to fight. To steal a line from Red, 'get busy living or get busy dying.'”

Kevin is the founder of "A Life Story Foundation." His non-profit organization helps raise awareness about Lou Gehrig's Disease -- or ALS -- and raises much-needed funds to find treatment and a cure for the disease.

LINK: You can learn more about A Life Story Foundation by heading over to the organization's website.