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Ryan Glinski, 3, beat ‘the worst of the worst’ of his rare intestinal disease

Weighing 8 pounds, 11 ounces, when he came into the world in Sisters Hospital in December 2010, Ryan Glinski seemed perfectly hale and hearty, a normal full-term baby.

But Ryan didn’t go home to Depew with his parents, Scott and Kelly.

“We opted to stay the extra day,” Scott said, “and that night he had all kinds of issues. He wound up going to Children’s.”

Ryan had a genetic problem, a disorder that affects one out of about every 5,000 newborns. He didn’t pass his first stool. His stomach grew increasingly distended.

By the time he was a week old, he was on antibiotics. A few days later, he underwent his first surgery. In all, he spent 45 days in the neonatal intensive care unit at Women & Children’s Hospital.

“We stayed there around the clock,” said Scott, who works for Local 22, Plumbers and Steamfitters. “We pretty much lived there for a while.”

Ryan was diagnosed with Hirschsprung’s disease, which affects the large intestine. Because of a lack of ganglion cells, digested food doesn’t move through its final passage from the body.

For most people with Hirschsprung’s, the ganglion cells are missing from only the end of the intestine. In Ryan’s case, however, his large intestine had none at all.

“He had the worst of the worst of that disease,” Scott said.

“His entire colon and the entire last segment of the small intestine did not have a ganglion cell,” said Dr. Kathryn D. Bass, director of trauma, pediatric surgery at Women & Children’s. “He did not have anything that allowed it to move.”

“This form of the disease represents less than 1 percent of all cases,” she notes, “and results in death the majority of the time.”

But Ryan pulled through. When he was 1, he underwent a surgical procedure at Women & Children’s to outfit him with an ostomy bag, which allowed him to pass waste while bypassing his large intestine.

“We did the first surgery to determine which part of his intestine was functioning,” Bass said. “Then we disconnected the large bowel and let the good functioning bowel empty into a bag. It turned his life around. It allowed him to pass stool and eat and thrive and grow.”

Shortly after he turned 2, Ryan had more operations, after which he said he “got my belly button back.” Surgeons took away the ostomy bag and removed his large intestine. His small intestine was stretched to fill the gap.

“They said that since he’s so young, the small intestine would actually learn the function of the colon by itself,” Scott said.

Still, Ryan lacks the normal nerve endings there. Potty training, Bass said, “is going to be a little harder for him. He’ll have to learn other cues. He’ll have to learn when his belly feels a certain way.”

Ryan now weighs 32 pounds, stands 40 inches tall and has inherited a passion for hockey from his father, who was a standout player at Hutchinson-Central Technical High School and Erie Community College.

“He’s doing good right now,” Scott said. “He’s running around. He’s playing hockey. That’s all we do. You’d never know there’s anything wrong with him. He’s just like a normal kid.

“He can eat everything, but we try to keep him high in fiber and high in protein. He really has no restrictions.”

Ryan’s fondest souvenirs from his stays at Children’s are photos of him with the Sabres mascot, Sabretooth, and autographed pictures of several Sabres players.

His visits to the hospital are not over, however.

“We still have our hiccups, our occasional problem,” Scott said.

Unlike many who undergo surgery for Hirschsprung’s disease, Ryan doesn’t have a problem with diarrhea. Quite the opposite. During the past year, he’s returned for treatment of constipation and has been continually monitored for a possible bowel infection. Once he developed a blood clot.

“Variety Nine, the ninth floor, it’s our second home,” Scott said. “When we go in there, it’s like ‘Cheers’ – everybody knows Ryan. He’s good with it. He knows. He’s not always the happiest of campers, but he goes with it.”

“He’s right on track,” Bass said. “He’s a very bright kid, and he’s really been able to cooperate with his care, which many 3-year-olds cannot.

“When he was younger, his therapy was a little more intensive, but now I see him about once a month. He’s fortunate he’s living in Buffalo. Otherwise, he’d have to travel to find the team that can make the diagnosis and provide the care.”

His mother, Kelly, said: “Hopefully, the hurdles are behind us.”