Local teen’s rare disease sparks legislation

After more than three years of fighting for their medical coverage for their son’s rare disease, a Land O’ Lakes family has seen some progress in their quest.

Florida Gov. Ron DeSantis signed the Patient Saving Act on June 12, which includes language requiring the state insurance plan to provide enteral formula coverage, regardless of age, condition or intake method.

Stephanie Walls, whose son Remington suffers from Eosinophilic Esophagitis (EoE), called the legislative victory “absolutely amazing.”

Florida Gov. Ron DeSantis signed the Patient Saving Act in June. Included is language requiring the state insurance plan to provide enteral formula coverage, regardless of age, condition or intake method. Stephanie and Remington Walls stand on the far right. (Courtesy of Stephanie Walls)

The rare EoE disease, which is incurable, causes food to deteriorate in his esophagus.

Remington, who was diagnosed at age 4, has lived a life without regular food or drink.

His only source of nutrition since then has come via a hypoallergenic amino acid-based liquid formula, called Neocate EO28 Splash. He consumes roughly 18 to 22 of the eight-ounce juice boxes per day.

Through it all, 19-year-old Remington has never let his life-threatening food allergy disease block him from pursuing his goals.

He is a former varsity baseball standout at Land O’ Lakes High School.

He’s a published author, and he has earned a volunteer assistant/team manager position at Valdosta State University’s Division I baseball program.

In 2016, his family learned that its insurance no longer covered the liquid formula required for sustenance. Without the insurance, the formula costs about $26,000 per year, Stephanie said.

The alternative was a feeding tube. But, with Remington’s active lifestyle, that was never an option, the family says.

So, Remington and his mom have been pushing for state and federal legislation for enteral formula coverage for medical nutrition — sharing their story with lawmakers and anyone who would listen.

The new law only impacts state employees, but still it is a move in the right direction and will help families like theirs who are struggling, Stephanie says.

“This is just a baby step, to the bigger steps that are going to be taken,” added Stephanie, an eighth grade language arts teacher at Cypress Creek Middle High School in Wesley Chapel.

“We’re still trying to get federal legislation,” she said. “It has to be broader. It has to have a wider span.”

Remington agrees with his mom: “Our goal is to get federal legislation passed, but it’s just a work in progress. We just take it one day, one step at a time.”

He added, “Honestly, our whole goal going into this was, whether it benefits us or not, we want to make a difference. We just knew that if this is happening to us, then it’s happening to other families.”

Getting help and helping others
At the state level, the Walls’ cause was picked during the legislative process by Sen. Kelli Stargel, a Republican from Lakeland, and Rep. Ardian Zika, a Republican from Land O’ Lakes. They sponsored enteral formula legislation, which ultimately led to an amendment to the state health bill.

As it stands now, “it only covers state employees,” Zika said. “My goal is I hope to see federal legislation addressing this issue .. .so we have comprehensive coverage for such a condition.”

He went on, “For me, this was an opportunity to be a voice for the voiceless. When I reflect back on my public service, this is going to be one of the highlights for me.”

Zika learned of Walls’ story before his election in 2018 to represent District 37 in the Florida House of Representatives.

“It was really heartbreaking,” Zika said. “I said, ‘Wow, this is something that I would be very passionate about because it’s life-changing for individuals.’”

The freshman lawmaker added, “Remington has overcome so much adversity. No one should go through what they’ve (the Walls) gone through. I’m just happy to be at the intersection in their life and do my part, but there’s much more work to be done.”

Remington and Stephanie addressed several committees in Tallahassee along the way, including the Senate Banking and Insurance Committee, House Market Reform Subcommittee and Government Oversight Committee.

Stephanie acknowledged the work was tiresome, but she said it also was empowering to be a voice for other families who are in the same boat.

“Our belief and our philosophy has always been that we need to help the people that come behind us,” she said. “Regular, everyday people can make a difference, but people have to understand that. It’s just about everybody making that difference.”

Seeing her son pick up the cause made the efforts all the more worthwhile, too.

Stephanie put it like this: “It is so rare to find an 18-year-old, at the time, meeting with legislators. He knew in his heart that this was the right thing that he needed to be doing. A lot of it he was kind of thrust into it, but he chose to continue.”

In November, Remington and Stephanie co-wrote “Homeplate: A True Story of Resilience,” a 118-page book that delves into a foodless life and insights on coping with a rare esophageal disease.

The project gained momentum to the point where Remington and Stephanie were called to speak at multiple events, including the American Partnership for Eosinophilic Disorders (APFED) Conference in Washington D.C. The Walls also presented to over 200 athletes at an Atlanta-based event organized by ACES Nation and All-In FC (Futbol Club) at Sugar Hill.

Meanwhile, Remington has big plans ahead. The college sophomore plans to try out for the Valdosta State baseball team this fall. He’s also studying communications as he considers a career in public speaking.

He hopes his story can inspire others facing similar challenges.

Determination is important, according to Remington.

“If you set your mind to it, you can do it. The only person that can stop you is you,” he said.

Published August 21, 2019

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