GRAND RAPIDS, Mich. (WOOD) — It’s a major milestone for a young Rockford girl and one her family thought would never happen: Thanks to a program at Helen DeVos Children’s Hospital, she has learned to eat.
Lexi Truax was born with a rare gene defect with which only 14 kids worldwide have been diagnosed. Until recently, she got the nutrition she needed to survive through a feeding tube.
“The kitchen is one of the biggest social places,” Sarah Truax, Lexi’s mother, said.
But for her family, mealtimes were one more thing 3-year-old daughter Lexi had to miss out on. Because of a gene defect, Lexi can’t see, walk, talk or eat like most people.
“She didn’t take anything by mouth,” Truax said.
That is, until they found the Intensive Feeding Program at Helen DeVos Children’s Hospital.
“We really think we are empowering families one bite at a time. That’s our mission,” the program’s director, Nancy Bandestra, said.
She said the program is the only one of its kind in Michigan and one of about a dozen across the country.
The program creates an eating plan for each child and teaches parents how to continue that plan at home. It uses positive reinforcement. For Lexi, that’s Taylor Swift music and sensory stimulating toys.
The Truax family says seeing Lexi take her first bites was incredible.
“We didn’t know if that day would ever come and she just loved it so much and it feels good to know that it helped her,” Truax said.
Lexi has four feedings a day that last 20 minutes. Her food has to be blended, weighed and heated to the perfect temperature.
Mealtime is now the Truax family’s favorite part of the day. The family says that would have never been possible without the program.
“They help kids like Lexi live a little bit more of a normal life,” said Lexi’s dad, Nick Truax. “There is really no way that we can thank them, just saying thanks is all we can do, but it’s amazing.”
The program is taking donations to pay for blenders and other supplies. If you would like to help, you can call 616.391.2000.