Culver woman to start treatment for multiple sclerosis
Lacey LaDawn was accepted into a clinical trial at Northwestern.
Back in 2011, Lacey LaDawn, of Culver, was playing volleyball with friends, and noticed that her feet had gone numb.
"I was active at the time, and played it off," said LaDawn, 32, a juvenile probation officer for Jefferson County, who was working on her master's degree at the time. "Joking around, I said I had MS (multiple sclerosis)."
The numbness started one day, and never went away. "A friend suggested I go to a doctor, because it could be a pinched nerve. She said I needed to take it more seriously," said LaDawn.
Eventually, LaDawn did visit a local doctor who ran a bunch of tests, which showed no signs of an illness. He referred her to a Bend neurologist, who recommended magnetic resonance imaging.
"I got an MRI that showed I had some active lesions in my spine," she said. "He wanted to monitor me to see if I got worse or they went away. That was in December (2011); in April or May 2012, I went back, and there were more lesions."
LaDawn was officially diagnosed with multiple sclerosis, a potentially disabling disease of the central nervous system, in June 2012. In order to slow the progression of the unpredictable disease, she went on a daily shot of interferon. Every six months or so, she had a steroid infusion, but the numbness never went away.
In late 2014, she became pregnant with her son, Emmerick, now 16 months, and stopped taking the medication.
"A lot of people (with MS), when they get pregnant, feel the best they've felt; I was miserable my whole pregnancy," said LaDawn, whose legs were numb during most of her pregnancy, but still worked. "There was always tingling and numbness."
After the birth of her son in August 2015, her symptoms worsened. "In December, I had a major relapse," she said. "It took the form of vertigo, and optic neuritis; I couldn't see out of my left eye."
Then, around May 2016, another relapse occurred, with similar symptoms, and she took a few days off. About that same time, she read an article about Canadians with MS doing well after receiving stem cell treatments.
"I started researching it and that's when I found Dr. Richard Burt at Northwestern University in Chicago," said LaDawn, noting that Burt has very specific criteria for those hoping to take part in his clinical trials.
"You have to be under the age of 55, (have a) disability score under a certain point, and one episode with active lesions in last 12 months," she said.
In September, she flew back to Northwestern University in Chicago with her father, Stan Miller, and was accepted for evaluation and participation in the clinical trials.
"I had an MRI that showed 30 active lesions in my brain and brain stem," LaDawn said. "I couldn't see out of my left eye."
Then, the battle with her insurance company began. "Basically, my insurance denied treatment; I had to hire an insurance advocate," she said, noting that it was finally approved, "but they're not going to pay for the actual transplant of stem cells. They deemed it experimental, so I have to pay for that out of pocket."
LaDawn and her fiancé, Chris Pepper, who has been very supportive throughout her ordeal, started a GoFundMe page to raise the $5,000 out-of-pocket expenses.
Monday, LaDawn and her father flew to Chicago to begin the tests in preparation for the stem cell transplant. She will return to Chicago Jan. 23 to have her stem cells harvested before she begins her chemotherapy treatment, which will take about 10 days. On Feb. 23, she will once again return to Northwestern for the stem cell transplant, and another 10- to 14-day stay.
In the meantime, LaDawn will continue to work as much as possible, and take advantage of the county's family medical leave when she's unable to work.
Pepper, who has been working in Milwaukie, is transferring to a Redmond branch, so he can take care of their son while she is in Chicago.
LaDawn is eager to undergo the treatment. "It's exciting. The goal is that it will stop the progression; a lot of people who get this see a reversal of symptoms."
As of Jan. 9, her GoFundMe page had received $1,725 of her $5,000 goal. To donate, visit the page at www.gofundme.com/35zchew.