WAVERLY – Courtney Bower just wants to be able to enjoy going to the playground with her children.
But most days, a trip to the playground is difficult, as the effects of multiple sclerosis have taken their toll on the young Waverly mom. She suffers from foot drop, fatigue and cognitive impairment, among other side effects of the disease.
Leaving the house can be a significant hurdle.
“Pretty much every day I don’t feel like doing anything,” Bower said. “But I’m a mom, so my work is never done.”
Bower received the MS diagnosis nearly two years ago, in October 2014. She had been experiencing symptoms for nearly seven years before the issue was officially acknowledged.
The troubles began after the birth of her oldest son, Quin. During the pregnancy she started feeling better, but within a week the symptoms returned. Now, she knows that what she experienced was a relapse of MS-related symptoms, but doctors at the time told her that her vertigo and vision troubles were related to childbirth.
She wasn’t too sure of their explanations.
“I told them ‘no something is wrong,’” she said. “That kind of stuff doesn’t affect your vision and make you feel like you’re in the ocean.”
The same process played out after the birth of her second son, Trase. Doctors again had the same response.
“Once again, no one could really figure it out,” she said.
After visiting a number of different doctors to no avail, Bower said she had more or less given up. That is until a fateful trip to Rider Chiropractic cleared things up.
She was just going to see if her spine was out of alignment, Bower said. After barely five minutes in the examination room, the chiropractor said she thought MS was the problem.
Bower was immediately referred to a specialist, where, lo and behold, she learned she had indeed been living with multiple sclerosis. It was a breakthrough moment for Bower and her family.
“I was a little shocked and a little relieved, because that made sense,” she said.
She and her new doctor pieced together her medical history, and Bower received more detailed information about the illness. That’s when it hit her that she was dealing with a monster of a disease.
“It really sunk in that’s that what it really was,” she said.
She was immediately prescribed treatment, but the first drug, Plegridy, didn’t work. Neither did the second method, Tecfidera. Both drugs left her wrestling with terrible side effects.
“Like the worst flu you’ve ever had,” she said about how she felt. “I had high fevers, I couldn’t eat – it was terrible.”
She’s started a third drug now, Tysabri, though she’s concerned about the possible side effects of that drug and worried it too will fail to provide relief.
“I really don’t want to be on this drug, because all of the stuff that can go wrong,” she said.
While she had been struggling with coming to terms with her illness, Bower voraciously devoured any information she could about MS and made friends along the way. She soon found support from others afflicted with the disease, finding understanding with those who were dealing with the same fears.
“It’s a tight knit community,” Bower said. “Everyone’s really nice.”
It was the same community that turned attention to a different treatment for MS, one still in its early stages and still being researched.
Hematopoietic Stem Cell Therapy, or HSCT, is a relatively new option for treating MS that attempts to “reboot” the immune system, according to the National Multiple Sclerosis Society. The treatment requires patients to receive chemotherapy to bring bone marrow stem cells into the bloodstream. Blood is then drawn and the stem cells are saved.
Following that, the patient is then hospitalized and given a significant dose of chemotherapies with the aim of killing the imune system. After that, the stem cells are then reintroduced to the bloodstream, and the patient is hospitalized while the immune system rebuilds itself. That process continues after the patient leaves the hospital, with the total process taking three to six months.
There is risk involved, as the powerful chemotherapies used make the body more vulnerable to infection. Some trials have reported fatalities, though that number is small.
Stem cell therapies are commonly used to treat cancer, but there have not been enough clinical trials to make it an FDA-approved treatment for MS in the United States. Many studies, however, show promising outcomes.
Stories she’s heard firsthand from those who’ve undergone the treatment have convinced Bower that HSTC is worth it. She reached out to those she had met online and learned how the treatment had changed their lives. One individual in particular went from using a wheelchair to being able to go hiking.
“If something like that is possible, I would love to take the chance,” she said.
And, she’s received that chance. She recently learned she made it on to the waitlist for treatment at Clinica Ruiz in Puebla, Mexico.
There’s one problem, though – a $75,000 price tag that must be paid up front.
Bower is currently studying respiratory therapy, and her husband, James, is the sole breadwinner of the home at the moment. Finding those kinds of funds is not a possibility on their own. So she’s asking for help.
She recently created a GoFundMe page and a website (www.savecourtney.weebly.com) to ask for donations. Bower is shy by nature, but her online connections have encouraged her to get out into the world and tell her story.
The cognitive impairment in particular is rough. She has trouble recalling memories, and, with two young boys, she doesn’t want to miss a single moment.
“I feel like my life is going on without me,” she said. “I feel like I’m not retaining it.”
She estimated she has about a year to raise the required funds. Interested donors can visit gofundme.com/courtneybhsct and follow her updates along the way.
Getting out and talking to people is a tough hurdle for the young mom, but if it means more time with her sons, she’s willing to do anything.
“I want it bad enough I don’t care what it takes,” she said. “They shouldn’t have to know that mommy’s sick. It kills me. It breaks my heart.”