Lisa Brown: 34-Year-Old Succumbs to Rare Disease That Caused Her to Starve to Death

Lisa Brown, the 34-year-old woman who was slowly starving to death because of a rare disease she’d fought for six years, died at her home in Brookfield, Wisconsin, on Saturday night, her husband confirms to PEOPLE.

“The last thing I said to her was ‘Go be free,’” her husband, Patric Brown, said. “I already miss her so much. I wish I could see her every day but she’s now at peace.”
She was able to plan her own funeral and made one rule very clear: No black allowed.
“Lisa said everyone has to wear bright colors and tell fun stories about her,” he said. “She even made a thank you card to everyone who comes. It’s beautifully decorated and shows an open gate.”
Throughout Brown’s 20s, she was healthy, happy and excited for her future with her husband. But that all quickly changed when she became very ill shortly after turning 28.

The 5’10” former model and substance abuse counselor began to lose weight and couldn’t figure out why. Her clothing became loose, she started vomiting after every meal and was barely able to move from severe stomach pain. When she finally stepped on a scale, she was shocked to see she weighed just 112 lbs. (down from 140 lbs., her normal weight).

In December 2013 doctors at Froedtert Hospital in Milwaukee were finally able to make a diagnosis: Superior mesenteric artery syndrome, a rare digestive-system disorder where part of the small intestine is pinched, blocking food from getting through.
After a corrective surgery didn’t help, doctors were at a loss as to what else was wrong.

With her mother and best friend, Patricia Neuhauser, they flew to the Cleveland Clinic in Columbus, Ohio, to meet with a team with experts on SMAS. Of the 400 cases ever reported, they’ve treated 14 of those patients.

Unable to get an intestinal transplant — something Brown was told could potentially save her life — she knew she’d continue to decline.
Patricia says insurance wouldn’t cover the hefty bill that her mother estimates would end up being over $1,000,000.

While some patients with Brown’s condition also have an eating disorder, Dr. Matthew Kroh who treated her at the Cleveland Clinic says that there is no indication that she does.

“Lisa is not anorexic or bulimic,” he told PEOPLE in 2015.

Brown, who was just 77 lbs. when she died, stayed strong until her very last breath.

Patrick vowed to be with her until she died.

“I’ll do anything for her,” he said. “We’ve always made a really great team.”
He’s also created a GoFundMe page to help with the costs of her memorial and for the money he’s lost for taking off work to be by her side full time.
On hospice care at home since October, she was still able to cook Pat an occasional dinner and work on her favorite past time, arts and crafts.

Days before her death Brown told PEOPLE she was ready to end her long and grueling battle.

“I’m not giving up,” she said, “I’ve just been fighting for so long. My body can’t take it.”

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