34-Year-Old Starving to Death from Rare Disease Down to 77 Pounds: 'It's My Time To Go. I'm Done Fighting'
"I just want to make sure my family is okay," says Lisa Brown
Lisa Brown’s mind frequently drifts back back to her 20s when she was having the time of her life.
She went to college, then graduate school and married the love of her life, Patrick.
“Everything was perfect,” Brown, now 34, tells PEOPLE. “I couldn’t have been happier.”
The 5’10 former model and substance counselor spent her time working, making gourmet meals, frequenting flea markets and driving around in her parents’ classic Mustang convertible with Patrick. She was active and never sitting still.
But things quickly took a turn for the worse shortly after her 28th birthday when she 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 pounds.
As she continued to lose weight, stares and comments from strangers only became worse.
“People would say I should eat a burger and they’d ask me why I was starving myself,” she says. “It was very hard to hear but I knew the truth.”
Now, three years after a surgery she hoped would fix her ailing body didn’t work, she weighs just 77 pounds and knows she’s out of options. She’s living out her final days at home.
“It’s my time to go,” she tells PEOPLE. “I’m done fighting.”
Her Six-Year Battle
In 2013, Brown was diagnosed with superior mesenteric artery syndrome, a rare digestive-system disorder where part of the small intestine is pinched, blocking food from getting through. The disease causes her to starve to death.
“I was hopeful,” says Brown. “I knew it was bad but I thought I’d be one of the lucky ones to survive. ”
In July 2015, Brown was down to just 89 pounds and didn’t know if she’d make it to her 33rd birthday.
At the time, she sat down with PEOPLE at the Cleveland Clinic in Ohio where she was being treated for SMAS.
To spread awareness about the debilitating syndrome, she created a video titled Be Brave SMAS Warriors, which she posted on YouTube. Her mother, Patricia Neuhauser, 68, then sent the video and a story a local news outlet did on Lisa to specialists at the Cleveland Clinic who are experts on SMAS- although there have only been 400 documented cases to date.
It immediately caught their attention. After a corrective surgery didn’t help at another hospital, the two relocated from Brookfield, Wisconsin in May, 2015, hoping to get answers. Hooked up to a feeding device 20 hours a day, she went through numerous tests and was diagnosed with gastroparesis, a condition that prevents the stomach from emptying properly.
Six months later, the hospital told Brown that she needed an intestinal transplant. It was something Lisa says she thinks would have worked, but insurance wouldn’t cover the hefty bill that her mother estimates would end up being over $1,000,000.
“It was my last chance at surviving,” she says. “But it didn’t happen. It was way too expensive to do on our own.”
After leaving the Cleveland Clinic, Lisa and Patrick didn’t give up. In May 2016, they flew to Jackson Memorial Hospital in Miami, Florida, one of the few hospitals in the country that offers the transplant. She remembers barely surviving the long trip.
“I was really deteriorating at that point,” she recalls, “and they told me I had to gain 20 pounds to have the surgery.”
It was an ambitious and unreachable goal that left her feeling disheartened when doctors told her that there was nothing they could do.
“I knew then and there I had no shot,” she says. “I couldn’t take it anymore.”
Her Final Days
Brown, who is now living out her final days with hospice care, still managed to cook Patrick one his favorite meals last week: Chicken green bean casserole.
“She just won’t give up,” says Patrick, age 33. “It’s unbelievable. To see her making this meal while she’s so sick says so much.”
In October, Brown decided to go to Seasons Hospice & Palliative Care to relieve some of the excruciating pain she was enduring a daily basis.
“It’s not a scary thing. It doesn’t mean you’re ready for death; it means you’re finding another way to help your fight,” she says. “It doesn’t mean you’re giving up. I’ve never given up.”
Dr. Paul Bullis, Lisa’s physician, says that for numerous reasons she wasn’t a candidate for further treatments after being seen by numerous experts who specialize in SMAS.
“Her heart is still very strong,” he says, “and she’s still able to enjoy each day she has left.”
While they’re now able to manage her unbearable pain intravenously, they have also given her some closure.
“She’s ready to pass away,” he tells PEOPLE. “We just don’t know when.”
Patrick, who typically spends more days on the road for work than he does at home, went on family and medical leave from his job in early December without pay to be with her.
“I’ll be with her until it’s her time,” he says. “I’ll do anything for her. 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.
Patrick has also found strength he never knew he had.
“The hardest part is just sitting here watching her suffer,” he says. “But I promised her sickness and in health. I was just hoping for the health.”
Brown’s days filled with fresh air, trips to her favorite local coffee shop and arts and crafts store are now mere memories for Lisa and her mother Patricia who lives just down the block from her.
“I miss the things we used to do everything together because we are so close,” she tells PEOPLE. “The fun things that a lot of people take for granted. Stopping at the grocery store or anything like that.”
When Patricia walks into a shop today that they used to frequent together, she can’t help but tear up.
“I miss Lisa every day even though she’s still here,” she says. “My daughter is too young to die. We need more time.”
For the past six years, Brown has never lost her determination, but now, she says, it’s her “time to go.”
“I’m done fighting,” she says. “I’ve tried everything.”
On Tuesday, Patricia and her husband Jack were able to take Brown to get her nails done. Naturally, she had them painted purple, the color for SMAS Awareness day, which is January 28.
“It is rare I have the strength to leave the house lately, but mom took me out for this special manicure for a gift,” she wrote on Facebook. “Each day is more of a challenge for me as my body protests every intervention, but it is things like this that lift my spirits to fight another day.”