32-Year-Old Who May Starve to Death from Rare Disease: How My Family Is Helping Me Survive
"Staying strong is really a group effort. There is no other way to put it. They hold me up," Lisa Brown tells PEOPLE
Lisa Brown, the Wisconsin woman suffering from a rare disease that could cause her to starve to death, says her family helps give her the strength she needs to survive.
The 32-year-old suffers from both gastroparesis, a condition that prevents the stomach from emptying properly, and 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.
Because of the seriousness of her condition, Lisa is hooked up to a feeding device 20 hours a day, which pumps 2,000 calories into her 89-lb. body.
“I couldn’t do it without my mom and my husband,” Lisa tells PEOPLE. “Staying strong is really a group effort. There is no other way to put it. They hold me up.”
A Mysterious Illness
Lisa’s health began to decline soon after her wedding to husband Patrick Brown in May 2010. The active and social newlywed, who was around 140 lbs. at the time of her nuptials, suddenly couldn’t keep food down, and her clothes started becoming loose around her 5’10” frame.
“Everyone was telling me, ‘You need to go to the doctor,’ and when I finally did, they just kept on telling me was I was fine,” says Lisa.
Her struggle to find answers took a toll on her family.
“There is nothing scarier than seeing your wife sick and you can’t do anything about it,” Patrick tells PEOPLE. “I’m a man. I’m her husband. I needed to help her, but I couldn’t. She was so sick and she was wasting away in front of me.”
At first, doctors put Lisa on medication for acid reflux, but when her body didn’t respond to the treatment, they continued to try to find the right diagnosis. In December 2013, two years after she first became sick, Lisa was diagnosed with SMA syndrome by specialists at the Froedtert Hospital in Milwaukee.
“We thought our questions were finally answered,” Patrick says.
Lisa went on to have corrective surgery for SMA syndrome in February 2014, which seemed to get her back on track. She even went with her family on their annual trip to Mexico that May, but when they returned home, her symptoms came back.
It was “heartbreaking” for Patrick, who says that “she wanted to be better so badly.”
A Second Diagnosis
As Lisa’s weight continued to drop, she became more determined to find an answer. She created a video about her story and posted it on YouTube.
Her mother, Patricia Neuhauser, then 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.
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.
“Before we got this offer, I wanted to just pick her up and carry her there,” Patrick says. “We really found hope when we got to the hospital in Cleveland.”
At the clinic, Lisa met with Dr. Matthew Kroh, director of surgical endoscopy, who confirmed that while she does have SMA syndrome, something else was wrong. He soon diagnosed her with gastroparesis in addition to SMA syndrome.
On June 3, after three and a half weeks at the hospital, 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. She will return to the Cleveland Clinic on July 13 to figure out the next steps of her treatment.
Hope for the Future
Lisa says she’s anxious to move forward with her treatment and get back to her happy life with her husband.
“When it comes to my marriage, there is a lot of guilt that goes along with it for me,” she says. “Patrick always told me that he meant what he said when he told me that he would be there for me in sickness and in health. I can’t express how much that means to me.”
She’s also grateful for her mom’s constant support.
“My mother is retired and her dream was to travel,” she says. “I’m sure this is not how she pictured it, taking care of her 32-year-old daughter every day. But she never leaves my side.”
But Patricia wouldn’t have it any other way.
“My daughter is the strongest person I have ever met,” she says. “I look up to my daughter, I really do. It should be the other way around.”
Patricia says she’s confident in her daughter’s road to recovery.
“We all go to Mexico together every May, and I told her that the second she is better, we are going to go. We are not wasting any time.”
As for Patrick, he can’t wait for his future with “the love of my life.”
“She says sometimes that this is our new normal, but I won’t let it be,” he says. “It’s normal for now, but not for long. She’s beautiful, intelligent and so young. Years from now, we are going to look back at this and think, ‘Wow, we got through that, we can get through anything.’ ”
Lisa’s family created a GoFundMe page to help with medical and travel costs.