'Stubborn, Amazing' LI Man Hopes To Stop Progression Of His MS With Foreign Treatment

PORT JEFFERSON, NY —Waylon Butler was an avid hiker, biker, and beachgoer.

He walked his loveable mutt, Reagan, daily.

On vacation in Myrtle Beach, SC, the Port Jefferson resident enjoyed swimming in the ocean with his three children.

He received a devastating diagnosis of primary progressive multiple sclerosis in 2017 but seemed to be holding his own. The last time he swam worry-free in the ocean was in 2018.

“A few years ago, I could get around fine,” he told Patch. “I walked around; I would be maybe a little tired at the end of the day. I could still go out into the ocean and swim with the kids. This week, it was like a project just to get from the hotel down to like 300 steps to the edge of the water.”

Waylon, 43, of Port Jefferson, got as far as the water and he had to sit down in a chair. When standing, he can only go up to his shins as the waves are too much for him.

He’s hoping to change that though with a special stem cell treatment in Mexico.

“At least I can stop the progression here for the next year,” he said. “If we go on vacation, I can [walk to the ocean].”

Though he now uses a scooter, he does not want to be wheelchair-bound.

“Then I can't go out on the beach with the kids; really move around the water park, that kind of stuff we did,” he said.

He just wants to stop the progression and is not expecting any miracles, but noted there are reports of people with similar diagnoses who've gone through the treatment in Mexico, and they "come back" and run marathons.

“They're extreme, you know, the best-case scenario,” he said. “I am trying to manage my expectations. I don't want to hope for too much."

It would help if he could stop his symptoms from getting worse, he believes.

“I think if it keeps getting worse, I'm going to miss out on more and the kids are gonna miss out on more; life is expected to just get harder," he said.

The children he shares with his wife Danielle — Riley, Madeline, and Declan — are now 15, 13, and 7, respectively.

The reason Waylon is seeking medical treatment out of the country is because he believes the infusion he takes for his MS treatment is making him sicker. The treatment seems to come with a lot of side effects, including tiredness and compromised immunity.

When the family plans their activities, they need to do so strategically and carefully due to Waylon’s condition.

He needs to take a lot of breaks.

Some things are not even doable, such as visiting the North Shore’s rocky, and very slippery, beachfront, which his kids love. If he fell, there would not be any way to get him up, as Danielle is not strong enough.

“That’s the totality of the activity, that he can kind of wipe out,” Danielle said. “It’s not like there's a lot of gas in the tank.”

He is determined physically, but she noted that it can take a lot out of him.

When COVID-19 hit in 2020, it didn’t improve Waylon’s circumstances any. Like many, his family not only struggled with the stress of isolation during the pandemic, but also the virus.

“We all had COVID,” Danielle said, adding that the virus had an impact on his respiratory system.

“He tended to be more susceptible to respiratory infection. Dealing with COVID in the aftermath was difficult.”

His family all tried “very hard” not to get sick — they masked up and took all the precautions that were needed, but there was “almost no way to avoid it.”

“There's something to be said for the impact that COVID had on his MS progression, and there are no studies that show that it is related. But I do think that there is some relation as it has gotten worse since COVID," Danielle said.

It’s not the first time that the couple, who have been married since 2003, experienced serious illness. Waylon’s diagnosis came five years after Danielle was diagnosed with breast cancer, though she is now cancer-free.

The family is hoping that the treatment in Mexico will be the solution to Waylon’s declining health. Though the couple works, Waylon in internet technology for a book publisher and Danielle as the development director for the Tesla Science Center in Shoreham, the $75,000 treatment is not covered by insurance.

To help with the cost, friends, along with Amy Hammok, started a GoFundMe to help the Butlers with paying for the treatment, and any additional funds collected will help them make their home more handicapped accessible.

“But our focus right now is just getting him the medical treatment that he needs,” said Danielle.
So far, the fundraiser has collected around $55,000 and that is including a generous donation which promised a match.

Hammock said she met Danielle when their children were very little, and noted that the family struggled with her breast cancer diagnosis, which was challenging, but that it turned okay because the family had already built a community around themselves by being involved.

“They're both extremely nice,” she said. “They're really fun and super friendly. I think really for them, being part of a community is probably the most important thing in their lives, and so they really spent a lot of time nurturing that community.”

Waylon says the family is already very grateful, and “frankly, a little overwhelmed, by the response.”

“We've already had people reaching out for support and have had help from people we haven't heard from in 20 years; people who have heard through the grapevine and wanted to support and help out where they can,” Danielle said. “It's really incredible.”

She said if anything she wants to get out the message that not all MS progressions are the same — it’s not like a head cold.

“You never know what you're going to get,” she said. “And you never know how long it's going to take for the progression to happen. It's different. It's different for every person.”

Danielle wants people to know how young her husband is, and how well-liked. It’s something that saddens her as she loses her composure in the interview.

“It's definitely not fair to have to deal with this kind of stuff on a day-to-day basis,” she says, fighting back tears.

“He calls it determination, and we call it stubborn, but it's pretty amazing.”