LAKEWOOD RANCH, Fla. (AP) — To honor the birth of his daughter, Kevin Swan had the image of a watch tattooed on his left wrist – hands permanently frozen at 5:27 p.m., the exact time 2-year-old Elliott Monroe Swan came into the world on Feb. 21, 2018.
“It was my first Father’s Day present; it is set to the time Elliott was born,” Kevin, 39, said through an electronic voice that dictates sentences shortly after he finishes crafting them by gazing at specific letters on a tablet.
In February 2012, Kevin was diagnosed with amyotrophic lateral sclerosis. In the years since, the disease – which attacks the nerve cells in the brain and spinal cord – has robbed him of mobility and speech. He breathes with help from a ventilator, eats through a feeding tube and communicates through technology one eye movement at a time.
It’s a process similar to what the late Rich Brooks used. Brooks was a Herald-Tribune columnist who died in May 2011 after battling ALS – commonly known as Lou Gehrig’s Disease – for 15 years.
In April 2012, Kevin founded A Life Story Foundation, which has raised more than $1.5 million for ALS awareness and research and can be found at alifestoryfoundation.org.
“I have always enjoyed writing,” Kevin said. “I used to write for the Huffington Post but they shut down the writer portal.”
Most recently, he started sharing his story via Medium.com.
In addition to that Kevin and his wife, Shaina, are revamping A Life Story Foundation’s YouTube channel to answer questions and offer tips on how to function through ALS.
“We get questions that are so basic, and we have seen it all over the past eight years,” he said.
Shaina said, “Everyone has to keep figuring them out.”
“Patients are just laying there in bed, doing nothing because they don’t know any different,” she added.
There is an existing network of nonprofits focused on curing ALS and easing the path of those afflicted with the disease.
The ALS Association is one umbrella organization.
The Ice Bucket Challenge fundraiser – which became a social media sensation – provided a high-profile boost to ALS research and raised $115 million for ALS, as well as millions for other nonprofits.
Pro golfer Chris Kennedy is credited with starting the phenomenon, when he challenged Jeanette Senerchia, his wife’s cousin, whose husband had ALS.
ALS activist Pat Quinn and Pete Frates, a former Boston College baseball player who was diagnosed with ALS, and his family are credited with prompting the social media explosion.
Quinn died in November; Frates died in December 2019.
Team Gleason, founded by former New Orleans Saints safety Steve Gleason, has leveraged his notoriety to provide more than $10 million in resources to 15,000 people and living with ALS – including Kevin, Shaina and Elliott.
In April 2013, when A Life Story was in its first year, Kevin accompanied Gleason on a trip to Machu Picchu, where he scaled the 8,000-foot height in an all-terrain wheelchair.
He had only connected with Gleason on social media that February. The adventure was filmed by ESPN to raise awareness of ALS.
Another big adventure started when Kevin met Shaina through the dating website Plenty of Fish.
“I actually messaged him, he was the only one I messaged,” Shaina said. “It came up with ‘This person is your super match.’”
A licensed captain with experience as a bartender, Shaina had moved down in 2016 – four years after Kevin.
She had already been visiting Florida as a snowbird when it was too cold to fish, and moved from Ohio for good, in part to take care of her grandfather.
They spent almost two months flirting online before Kevin asked her to go see Jerry Seinfeld at Ruth Eckerd Hall.
Later that same week, after Kevin and Shaina went on their first date, they adopted a four-year-old St. Bernard mix, Cash – named for the singer Johnny Cash – from Nate’s Honor Rescue.
“I always remind Cash that I came first,” Shaina quipped.
Cash had been ticketed for a home with another family, but he quickly bonded with Kevin and Shaina.
Kevin and Shaina had a courthouse wedding Jan. 26, 2018 – a year after their first date, with Shaina already pregnant with Elliott.
The watch emblazoned on Kevin’s left wrist is a model designed by the British company Farer and manufactured in Switzerland.
“Kevin loves fashion,” Shaina said. “He actually looked up an Instagram watch that he liked – he picked the exact watch he wanted – and got it done so he put a picture on the Instagram.
The watch, a Farer Universal Lander GMT, had actually been discontinued.
When the company found out what Kevin did, they sent engraved watches to Kevin and his brother Zack.
Kevin and Shaina are looking to share their experiences and offer insights they learned along the way.
Shaina creates the videos. One of the more popular ones covers how to make healthy smoothies for a feeding tube.
“You can actually use the food as a healing ingredient,” she narrates, while going through the step-by-step process. “We really try to be vigilant about what goes in Kevin’s body.
“He no longer has gluten, sugar,” she continues. “He is vegan other than a little bone broth every now and then so that he can feel proud about himself but it is so imperative that you keep inflammation down that you’re feeding them all type of fruits and vegetables and getting all the proper nutrition.”
The posts on Medium.com and the revitalized YouTube site are also ways to get the message out for the foundation, which like many other nonprofits lost the ability to host traditional fundraisers because of the COVID-19 pandemic.
The main 2020 fundraiser was pushed up a month to March 14, as A Life Story partnered with the Circus Arts Conservatory for Cirque to Cure, which raised more than $100,000.
Prior to COVID-19, fundraisers had been event based.
“Kevin came up with a strategy to take it online and cast a really wide net,” Shaina said.
In addition to monetizing social media, possibilities include an online gala and product sponsorships.
“We just started to try and completely change the way we operate the foundation,” Kevin said. “Without events, we have to find new ways to raise money.”
“I think that people connect to a brand or a cause based on their personal feelings,” he added. “I try to think about the foundation as a marketing company.”
While the nonprofit continues to find its financial footing in the new economic reality, it may also merge with a larger nonprofit.
The messages Kevin conveys through A Life Story are equal parts humor and hope.
For example, one video offers a take on “Ferris Bueller’s Day Off.”
It was supposed to deal with how to shower with a tracheostomy tube, but they ran into some lighting issues, the YouTube description explained. “So we decided to have some fun! We are children of the ’80s and that means that We love Ferris Bueller’s Day Off! It’s just as good now as it was two decades ago!”
One Medium post Kevin wrote, titled “We Hired a Guy off Craigslist,” with the subtitle, “And it saved our marriage,” sounds provocative but is actually a lighthearted look at how they found Josh Graff, who works as a full-time caregiver – which allows Shaina to go on occasional errands without Kevin.
Others deal with how they first met or relay the importance of date night at a local restaurant. Though Kevin has not eaten solid food in years, he and Shaina have been exploring St. Petersburg’s dining scene since moving there from Lakewood Ranch in September.
That move was prompted by Kevin’s desire for a more urban lifestyle. A 2000 graduate of Southeast High School, Kevin had lived in New York City and Chicago before returning to the Sarasota area.
He spent almost seven years in New York – at first working in advertising, only to quit his job to wait tables and try and make it as an actor or a reality show host.
Kevin and another waiter formed Cocktail Napkin Productions, a television production company. It was then that he contemplated producing a reality TV show about his friend, celebrity headshot photographer Peter Hurley.
Kevin at first approached Hurley about shooting his acting headshots.
The two men bonded over their upbeat, positive look at life.
Cocktail Napkin Productions spent several days with Hurley, shooting a promo for a reality show, “Focus.”
They never found a buyer, but their friendship deepened.
“It was a bonding experience,” Hurley said. “We were doing this thing where they were this little production company putting out a chunk of change to believe in me, to do it at a time when they were trying to get their feet off the ground.
“He’s an incredible inspiration and he’s been beating the disease the best he can for a long time now.”
They stayed in touch, even after Kevin moved on to Chicago, where he worked as director of communications for SingleHop, an IT-hosting company. The ALS diagnosis spurred his next move, this time to Lakewood Ranch to be closer to his parents.
In February 2019, Hurley offered a workshop hosted at Ringling College of Art and Design as a fundraiser for his friend and the two often keep in contact.
“I’m so proud of him and what he’s done in his strength,” Hurley said. “He’s living a full life, he’s having kids – it’s amazing.”
The move to St. Petersburg was part of that quest to pursue a full life.
“I’ve never been one to be quiet or a wallflower,” Kevin said. “So the outreach is equal parts ego and wanting to cure this terrible disease.”