COLUMBUS, Ohio — Two years ago Christy Leiter noticed things about her daughter, Eleanor.
“It seemed like something was off,” she said.
At 7 months old Eleanor wasn’t hitting milestones. She hated tummy time and wasn’t rolling over. A visit to the pediatrician turned into a visit with a neurologist and a pediatric feeding clinic. In July of last year came the diagnosis: Chung-Jansen syndrome. It’s a rare condition with low muscle tone, development delays and learning disabilities.
Because of it, Eleanor needed a feeding tube and with it; formula.
“I truly believe it completely stunted her eating because she had zero interest in eating anything,” Leiter said.
The Feeding Tube Awareness Foundation has determined more than 300 conditions that could require children to need nutritional support through a tube. Across the country more than 189,000 or 40 percent of people with feeding tubes are children. Surprisingly, though, Leiter says non-formula diets don’t really exist.
And then, they did.
Leiter turned to Real Food Blends, a company that specializes in a nutritional variety specifically for those who are tube-fed. Leiter says the healthier option gives Eleanor more energy, she’s hitting milestones and even started eating by mouth.
“Once we made the switch it was almost immediate that she started eating by mouth,” she said.
Leiter now advocates for education and awareness to other families. Her YouTube channel, Empowering Eleanor, serves as a video journal of the journey.
“I’ve just been sharing our journey in hopes that if other people are in the same predicament we are in, maybe they can try it and it will work for them,” she said.