August is Digestive Tract Paralysis Awareness Month. During this month we’re going to be featured some stories from people who are influential or inspiring in our community. Today we’d like to share the story of Lucas Nagy and his mom Traci.
He Most Certainly Would Have Starved
by Jim Sliney Jr
Traci Nagy is the mother of Lucas Nagy. Lucas was first diagnosed with delayed gastric emptying when he was only 3-months old, though his challenges began from the day he was born.
“He wasn’t able to tolerate bolus tube feeds,” Traci told us. “It wasn’t until he was 20 months old when he was diagnosed with Koolen de Vries Sydrome.” Koolen de Vries is a disease characterized by delayed development and mild to moderate intellectual disability. The diagnosis helped make sense of his gastroparesis: his digestive tract could not function because he had not developed sufficient muscle tone. Lucas had to live with a feeding tube.
Lucas is 9-years old now, and he functions much better than he did as an infant, in large part because he gradually developed the muscles that had been so weak and put him at a disadvantage at birth, but also because of his feeding tube regimen. “We’ve been able to adjust his feeds depending on how his motility is on a given day.” That kind of insight and flexibility is important when relying on tube feeding; it helps keep nutrition in balance. Lucas’ ability to get constant nutrition has helped him grow and thrive and enjoy his childhood.
“Lucas loves trucks and buses and elevators. Ironically, he loves supermarkets and pushing the shopping cart.” But as his mom, Traci says, “the worst part of his illness is that Lucas has not known life without these problems.”
It might be instinctive to imagine a hard life full of setbacks and challenges, but good has come from Lucas’ illness too. In 2010, Traci founded the Feeding Tube Awareness Foundation (FTAF), which supports the parents of children who are tube-fed (parents like Traci). The FTAF is a 501(c)(3) charitable organization run entirely by other parents who volunteer their time. “I wouldn’t have started the FTAF if Lucas’ life wasn’t saved by tube feeding. He most certainly would have starved without it.”
Life can indeed be challenging when someone you love-unconditionally is saddled with a disease that has no cure. It means a new life for the person with the disease, but also for the people who love and care for them. We asked Traci what, with all of her experience, would she say to someone else who has just confronted their own chronic illness or the illness of a loved one. “Connect with other people. People who have been in your shoes. They will have information, resources and advice that can help you. Also, find a doctor who listens – one you can trust. Remember, you’re not alone in this.”
If you have a story to tell about your gastroparesis contact our Newsletter Editor, Jim Sliney Jr at firstname.lastname@example.org and we’ll help you tell it.