When Lisa Brown was in her late 20s, she was rapidly checking off every major goal she had in life – graduate from college with honors, go to graduate school, get married and have a rewarding career.
Her romantic wedding to Patrick Brown in May 2010 “was beautiful and special. I was lucky enough to marry the love of my life,” Brown, who was 28 at the time, tells PEOPLE. “I really was just so happy.”
But by the following summer, her life took an unexpected turn.
“We noticed that Lisa was starting to lose weight,” says her husband, Patrick Brown, 31. “We weren’t concerned at first, but then it just wouldn’t stop. Something was seriously wrong.”
Life on Hold
Lisa, who suffers from gastroparesis, a condition that prevents the stomach from emptying properly, frequently reflects on the past because it’s the only thing she knows is certain. When it comes to her future – and even the present – there are too many unknowns.
On May 20, the 5’10” woman, who once weighed 140 lbs., sat in her hospital room at the Cleveland Clinic in Cleveland, Ohio, weighing just 89 lbs., dressed in pink (her favorite color) from head to toe. The sun shone through the window onto the 32-year-old’s frail frame. Her feeding device, which she is hooked up to 20 hours a day, stood on one side, while her mother was on the other.
“We were your average 20-somethings,” Lisa says in a soft voice, so she doesn’t exert too much energy. “All the way until I was about 28 years old when I got married and little things started to go downhill.”
Lisa, who grew up in Brookfield, Wisconsin, never thought about her weight, but the former model and substance counselor became concerned after her clothing started to become loose. It was only when she weighed herself on her mother’s scale that she realized she was down to 112 lbs.
“Never in my adult life had I ever been this weight,” she says. “And every month it got worse and worse.”
Because she was vomiting after every meal and unable to move due to severe stomach pain, doctors prescribed her acid reflux medication, which never worked. Her medical condition was more severe than anyone thought.
In December 2013, Lisa finally thought a cure was in sight.
She was diagnosed at the Froedtert Hospital in Milwaukee with superior mesenteric artery syndrome (SMA syndrome), a rare digestive system disorder in which part of the small intestine is pinched, blocking food from getting through.
She had corrective surgery the following February and felt better for a few months. She even went with Patrick and her family on their annual trip to Playa del Carmen, Mexico, but once they got back, her health started to decline, which was “beyond devastating,” she says. Lisa’s doctors went back to the drawing board.
Fighting for a Cure
As Lisa’s weight continued to drop, she make more determined to find an answer. In April, she created a video about her story and posted it on YouTube.
Her mother and best friend, Patricia Neuhauser, sent the video and a story a local news outlet did on Lisa to specialists at the Cleveland Clinic in Ohio, who are experts on SMA syndrome – although there have only been 400 documented cases to date.
The video got their attention, and on May 11, a local business offered to fly Lisa – who was too weak to get on a commercial flight or in a car for more than a short drive – to Cleveland on their company jet for free. Patrick, an engineer, had to travel for work, so Lisa’s mother went with her.
“Anyone who is a mother understands there is nothing worse than having your child ill,” Patricia tells PEOPLE. “When we left home to go to the hospital, people asked us how long we were going to be there, and we just said, ‘We don’t know. Three days, three weeks, three months, I don’t care how long it is. We are not leaving.’ ”
What Lisa did leave behind in Milwaukee were brutal comments from strangers telling her to eat a burger and asking her why she was starving herself.
“At first, I would say stuff back and defend myself,” says Lisa. “I’ve come to understand that people will say mean stuff, but I know the truth.”
Lisa arrived at the hospital to meet with Dr. Matthew Kroh, director of surgical endoscopy.
“Coming to this hospital was and is a dream,” Lisa says. “It’s always hard when you have been through as much as I have with this disease. It’s like a puzzle. It’s never just one thing. Dr. Kroh and all of his support staff reassure me that we will put this puzzle together.”
Lisa never wears a hospital gown and instead opts for outfits she would wear back home in Milwaukee – lots of color and sparkle, even on her fingernails. She has given every nurse a unique nickname and takes advantage of the art therapy sessions they offer for patients.
She often thinks about her life before she got sick. The days when she would go to flea markets and drive around in her parents’ classic Mustang convertible with Patrick. The days she was working, cooking pizzas and gourmet hamburgers.
“We would try and get lost and find new little hangouts in the Milwaukee countryside,” she says, smiling. “I have no doubt that our marriage will recover and be able to go back to what it once was because I know that we are strong.”
Dr. Kroh’s goal for her three-and-a-half-week hospital stay was simple but aggressive: Deal with her malnutrition head-on and figure out what else could be wrong aside from SMA syndrome.
Because of steep medical bills and travel expenses, her family created a GoFundMe page to help with the costs.
On June 3, Lisa went home 6 lbs. heavier than when she arrived – and with hope that results from a SmartPill, which measures acid-base changes as it passes through her, would be able to lead to more answers.
And it did.
In early July, Lisa, who now weighs 94 lbs., finally received a new diagnosis: gastroparesis.
“Her stomach doesn’t work properly,” Dr. Kroh says. “We just now need to see what will work best for her to get her to a good spot.”
On July 13, Lisa will return to Cleveland to figure out the next steps in treating her gastroparesis. Her feeding device will be replaced with a rejejunostomy feeding tube, which will give her more freedom to move around.
Lisa says she “keeps hope in her back pocket,” and with every day, she feels closer to getting her old life back.
“When I look into the future, I know I will never be the same person I was, but I’m okay with that,” she says. “This experience humbles you.”
She also dreams of taking a trip to Italy with her husband, and she can’t wait to be able to wear her “one-of-a-kind” pink sapphire ring that is currently too big for her.
“I don’t take anything for granted, even going on a walk,” Lisa says. “I take it day by day, but I will never give up.”