Facing death, NJ woman's body weakens while her spirit stays strong

Why surgeons removed woman's entire GI tract

In March, doctors removed Amanda DeAngelis's stomach, gallbladder, and large intestine.

Amanda DeAngelis, of Allentown, Monmouth County, New Jersey, was once an active young woman working as a publicist for independent films. Then a rare combination of debilitating diseases took away her bright future.

For years, stays in the hospital have been routine occurrences for Amanda. But in recent months, a hospital is all she's known. She posted a video on her Instagram page back in March, when doctors removed her stomach, gallbladder, and large intestine after they determined the organs were doing more harm than good to her 34-year-old body.

Amanda and Chris DeAngelis pose on the beach for a wedding photo. (Macpherson Photography)

Amanda suffers from a rare condition known as gastroparesis. It is an objective failure of the stomach to empty properly, according to Dr. Rabia de Latour, a gastroenterologist who has not treated Amanda.

"So when you eat food, a variety of different mechanical and neurological things happen to push that food into your small intestine," de Latour said. "But when that doesn't happen properly or it's slow delayed or doesn't happen at all, that's called gastroparesis."

Amanda and Chris DeAngelis pose on a bench for a wedding photo. (Macpherson Photography)

Gastroparesis itself is usually tolerable. What makes Amanda's case worse is that she also has an autoimmune disorder and a rare antibody attacking her gastrointestinal tract.

"The bad days outnumber the good days, where we've been in the hospital for more of the year than we are at home," Chris DeAngelis, Amanda's husband, said. "And, you know, it's just the vomiting, the constant nausea, the pain — [it] just kept getting worse."

Amanda and Chris DeAngelis pose on a bench for a wedding photo. (Macpherson Photography)

These days, Amanda is so tired and weak that even speaking is rare. Chris said the two of them had to make a tough decision: last week Amanda moved into a palliative care unit at Mount Sinai. She is now essentially in hospice.

"It really is like a freight train," Chris said. "You never think — especially in our 30s — you never think this is a decision you're going to have to make. For a while, it didn't even seem real."

Amanda and Chris DeAngelis pose on a boardwalk for a wedding photo. (Macpherson Photography)

Chris said Amanda has gotten weaker every day but remains strong in spirit.

"I can't believe how strong she is," he said. "I don't know if I would have been able to have taken this on the way she did."

Amanda and Chris DeAngelis pose on the beach for a wedding photo. (Macpherson Photography)

They wanted to share their story for two reasons. First, to shed light on the fact that, even with insurance, Chris is now facing upwards of a $100,000 in mounting medical bills. A GoFundMe campaign created by a friend has so far raised more than $30,000.

But Amanda and Chris also want to remind anyone who hears their story to be kind.

"Just to, you know, be empathetic," Chris said. "You just never know what somebody might be going through or what is going on in their mind or within their body."