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West Valley mom fights rare disorder that makes eating excruciating

WEST VALLEY CITY — They say art imitates life. For Jennifer May, the mother of four, her life imitates art.

"I'm being kept alive by a machine," said May, of West Valley City.

At the movies watching "Miracles From Heaven," about a young girl with gastroparesis, a rare, incurable stomach disorder, the alarm on Jennifer's feeding tube goes off.

"You know people were giving me dirty looks and stuff like I had my cellphone on and I was about ready to say to them, 'This is actually my feeding tube. I have the same disease this girl does. It's not a cellphone.'"

Gastroparesis prevents proper stomach emptying. May is attached to an IV 16 hours a day. Her nutrition bypasses her gastrointestinal tract. It's her last option because it carries risks like infection, liver problems and blood clots. Her body rejected her feeding tube formula and eating is excruciating.

"It feels like you're eating shards of glass," she said.

Now plagued by nausea and fatigue, life was once very different. A prankster who was all about fun, her kids mourn the mom that used to be. "When we were with her we were doing something: swimming, hiking. We were always doing something, and she can't anymore," said Amber Lane, Jennifer's daughter.

"It's like saying goodbye to the old you," May said.

Married since 2009, she and her husband loved going ice fishing at Strawberry Reservoir. "There's no way I could get up there to do that. The energy just wouldn't be there," she said.

She's had stomach problems since she was a teenager. It got progressively worse four years ago and, at one point, she weighed 82 pounds.

May's case is a bit of a mystery. All of her tests came back at the upper limits of normal, according to her nurse practitioner, Merin Kinikini, at Intermountain Medical Center. But May is miserable. It's anything but normal for her.

"Devastating. Absolutely devastating," Kinikini said. "If you think of our society, everything we do is centered around food to some degree. We take it for granted. We eat from three to 10 times a day for some people."

But May's family just wants her to get better. Her rapid decline has been shocking and emotional, especially for her husband. "How fast it has set in and taken over her life," Stacy May said. "It just came out of nowhere."

Though Jennifer's life is limited, her grandchildren are the reason she gets up in the morning and her husband and daughters give her strength. "I don't take a minute, a second, a day for granted anymore."

They are why she refuses to give up hope.

Email: hsimonsen@deseretnews.com