WESLEY CHAPEL, Fla. — Before they had a name for it, the Walls family’s experience with eosinophilic esophagitis (EoE) began.
- Teen developed rare condition
- A meal supplement for the condition began to cost too much
- Parents were able to gain legislative attention
- More Good News stories
“He was just really sick as a baby,” said Stephanie Walls of her son, Remington. “We had a difficult time even just nursing him, giving him baby formula. He just wasn’t growing. He was becoming lethargic - almost to the point of malnourished.”
It wasn’t until he was three years old that Remington was diagnosed with the rare condition that makes eating food impossible.
Now 19 years old, he survives on an amino acid-based formula and drinks 18-22 of the eight-ounce juice boxes a day.
“It’s our normal. It’s our whole family’s normal and it’s everybody in our lives’ normal. When I was first diagnosed, it wasn’t, but as you go through it, you just get used to it,” said Remington.
There was another option: a feeding tube. Remington said for him, that was never a realistic possibility.
“For me, the way I saw it was if I got a feeding tube, I would never play baseball. Whether that’s true or not, I didn’t care. That was my driving force behind the fact that I was never gonna get a tube,” said Remington, who made All-Stars while playing baseball for Land O’ Lakes High School.
“My whole life, I had doctors, and even my own parents, would tell me, ‘You’re going to have to get a tube one day. You’re not going to be able to drink enough. Nobody’s ever drank enough. You’re not supposed to be able to live off the formula.’ And I just said, ‘Watch me,’" Remington said.
The formula worked for Remington, but then, three years ago, the family received another blow. His parents’ insurance stopped covering the drinks. The Walls went from being able to access it at no cost to facing a potential bill of $26,000 a year.
“We were incredibly worried. My husband and I, we just don’t have the means to come up with $26,000 extra a year,” said Stephanie.
“It was a literal worst case scenario. It was like I’d sit back and be like, ‘What do we do now?’” Remington added.
The effort to get a bill passed three years ago failed, but the Walls continued sharing their story with legislators. She said Sen. Kelli Stargel was the earliest supporter.
“Still had support in the Senate, but we were desperately trying to find anyone on the House side. Couldn’t find anyone on the House side to pick this up,” said Stephanie.
“It blew me away. To me, it was a life and death situation,” said Rep. Ardian Zika, the freshman lawmaker from the 37th FL House District. “This is a hard working family from Pasco that paid their health insurance premiums, and the insurance company decides not to cover it. This is not something that is nice to have. This is something you need to have.”
Still fighting for change
Language was added in an amendment to a bill to require the state group insurance program to “provide coverage for medically necessary prescription and non-prescription enteral formulas and amino-acid-based elemental formulas for home use, regardless of the method of delivery or intake, which are ordered or prescribed by a physician.”
Gov. Ron DeSantis signed the amended bill last week.
“There was just this sense of relief that that legislation had passed, which is wonderful,” said Stephanie.
But the Walls also said their work isn’t done. The legislation only impacts state employees, and they’d like to see that expanded to include more families in need.
“Now, the goal is to step up the game. We’ll have to start pursuing that angle later, but this is a huge step in the right direction. It’s going to still help so many families,” said Stephanie.
Remington’s formula still won’t be covered by his parents’ insurance, since they don’t work for the state. He agrees, though, that the legislation is a victory.
“It means a lot to us because we were able to make a difference, and that was our whole goal we when we went into this," Remington said. "We wanted to be the voice for the voiceless and just be able to make an impact on other people’s lives, whether it benefited us or not."
Remington and Stephanie also wrote a book, “Home Plate”, about their journey with EoE. They said their goal was to educate the public about conditions like Remington’s.