JACKSONVILLE, Fla. — Isaac Toenies is one of thousands of children in the United States who relies on a feeding tube for nourishment.
“Isaac is two and a half. And he's just the most wonderful little guy,” Beth Toenies, Isaac’s mother, said. “He is a true warrior in every sense of the word.”
Her son spent the first 79 days of his life in the hospital. A feeding tube allowed him to come home and make sure he gets the nutrition his body needs.
“Isaac is what they call a unicorn, because he is a one of a kind,” Toenies said. “He's the only one in the world with his exact set of challenges that he's going through, so he's a part of the Undiagnosed Diseases Network, which basically just means a bunch of super smart people are out there trying to figure out what he's going through and what to expect for his life.”
Isaac gets 20% of his nutrition by mouth, but 80% comes from a feeding tube because he has a hard time swallowing. Right now, he has one called a G-Tube that looks like a little button.
“So not every child can eat by mouth, and there are hundreds of different invisible reasons why you might not know by looking at a child or an adult that they you know, there's an underlying condition,” Toenies said. “What the feeding tube has been able to do for us is keep Isaac, well nourished, keep him alive, but also it's become an easy part of our life.”
She remembers wondering when her son first got a feeding tube if he would ever be able to swim or take a bath with a feeding tube.
“The news that I'd like to share to the world is Isaac can swim, and he can crawl around and be a typical child in so many ways. He's just an extra special child that gets to eat in multiple ways,” Toenies said.
She hopes by sharing Isaac's story during Feeding Tube Awareness Week that people will ask questions and not be afraid of his feeding tube.
“Most of the families just like us, we want other kids to someday embrace our children too as their friends. They won't be able to do that unless we talk to them about it, and let them know the differences, and it's okay to ask questions,” Toenies said. “You know being different is something that's absolutely beautiful.”
