To Seth and Stephanie Lerg, it seems at times like only yesterday that they were honeymooning on Hilton Head Island, hardly a care in the world, their immediate future wrapped up in nothing more complicated than where they’d next play golf.
But like any other couple on the verge, their road map became more unpredictable and complicated with the births of their children. And while enjoying those days and nights alongside South Carolina’s soothing surf, they never imagined the story of their lives would include a feeding tube, constant fear of infection and too many stays at a hospital.
“For five months, Ellis was 100 percent reliant on a feeding tube for all his food and liquids,” his mother says of their 16-month-old son. “So imagine having a mobile child hooked up to an IV pole just as he’s starting to crawl and walk.”
Ellis doesn’t have an illness or disease per se, but his lungs have been compromised by an inexplicable inability to ingest food or drink without aspirating virtually everything he consumes.
Because a virus or bacterial infection would have more serious consequences on him than other kids his age, his parents have to constantly safeguard him from threat of germs. “Pretty much everywhere we go, we have to be cautious,” says Stephanie.
Except, thankfully, for one place.
“This,” says Stephanie, surveying a large playroom at the Children’s Healing Center, “is a place where he can just run around and be a kid.”
It’s also respite from the storm for Ellis’ older sister, Emma, 5, who suffers from various allergies, and also has to be careful of what she might contract for the sake of her brother’s health.
“So it’s actually the perfect place for both of them to go,” says mom.
The Lergs, who live in Caledonia, have been visiting CHC a couple of times each month since it opened last fall. Emma also attended a special winter break camp and is already looking forward to another session this coming spring. She especially enjoys the opportunity to create art.
Ellis, meanwhile, just enjoys the freedom of being able to toss balls, play with an assortment of toys and mingle with other children to his little heart’s content.
The CHC also provides some breathing room for Seth and Stephanie, who both hold down full-time jobs, and appreciate the rapt attention CHC’s staff pays to all the children who gather to play. “The support from the volunteers here is so critical,” observes Seth. “It means a lot to us that they’re here, and I know it means a lot to the other patrons as well.”
Though Ellis’ future is uncertain, his medical team is meeting with success as they slowly wean him off the need to use a feeding tube for all his nutrients. With coaching from a speech therapist and others, he’s adapting to some solids, as well as liquids that are thickened to a consistency that Ellis is able to keep down.
During his first year, Ellis contracted pneumonia that required three stays in the hospital. “Hopefully, we won’t have a repeat of last year,” says Stephanie.
The Lergs are hoping that as Ellis improves, they’ll be able to travel more as a family, though doing so means packing up their vehicle with four people, two dogs (Max and Sami) – as well as their son’s meds, formula, that IV pole, a feeding pump and more.
Through all the challenges, they’re grateful that one special chapter in the story of their lives includes the CHC.
Going to a children’s museum or restaurants with play centers “are all out of the question,” says Stephanie.
“But here,” offers Seth, “it’s a safe zone.”