When Alexandria Beeler was 10 years old, she was thrown from a snowmobile in a family friend's yard on New Year's Eve. She walked away with bruises, but the next day her mother took her to the family doctor, who ordered an MRI, just in case.
A few days later the family got a call — something was wrong. Brain scans showed scarring and inflammation, but doctors couldn't immediately determine a cause. It might have been there her whole life. They doubted she would live past 13.
A dozen years and three brain biopsies later, Beeler is still alive. Now 22, with a head of thick blonde curls and an easy laugh, Beeler doesn't come across as someone who's spent more than half her life in and out of hospitals. Between medical appointments and hospital stays, she defied doctors' expectations that she might not excel in school, and now she's studying psychology at Eastern Washington University with plans for graduate school.
"When someone tells me I can't do something, I'm going to go do it," she says.
But she suffers from left-sided weakness and seizures that started several years ago, and she can unpin the shorter hair above her right temple to measure how long it's been since it was shaved for her most recent biopsy in February. She recites the acronyms for all the ways doctors have looked at her brain — MRIs, PETs, EEGs, CAT scans... "Any brain scan you can think of, I've had it," she says.
Most frustrating of all, she still doesn't know what's wrong. After all the tests and biopsies, she doesn't have a diagnosis.
Her doctors in Spokane have told her there's nothing else they can do. This year, after her most recent biopsy, she was invited to the Mayo Clinic in Arizona to be fully evaluated by experts. The trip is scheduled for the end of August, and Beeler sees it as her last chance for answers.
"If Mayo can't figure it out, I'm done, and I'm just going to have to live without knowing," she says.
To pay for the trip, she and her family ordered bracelets, started a Facebook page called "Get Alli to the Mayo Clinic" and organized an online fundraising campaign.
In doing so, Beeler joined a growing number of Americans who have turned to crowdfunding to help with health costs, either because they don't have insurance, or more commonly because insurance doesn't cover all bills and living expenses.
Medical costs contribute to more than three out of five personal bankruptcies, according to a frequently cited 2007 Harvard University study. That percentage was up from just under half of bankruptcies in 2001. Most remarkably, more than three-quarters of the people surveyed had some type of health insurance.
More recently, an analysis of western Washington state bankruptcies produced by the Fred Hutchinson Cancer Research Center and published in the journal Health Affairs in May found that cancer patients age 21 and older were almost three times more likely to go bankrupt than people without cancer. "Although the risk of bankruptcy for cancer patients is relatively low in absolute terms," the authors wrote, "bankruptcy represents an extreme manifestation of what is probably a larger picture of economic hardship for cancer patients."
Even with insurance, there are deductibles and copays, plus the inevitable costs of having ordinary life upended: transportation, emergency housing, lost paychecks while unable to work. The mounting costs are often paired with uncertainty — how long it will take, whether it will be a full recovery and what kind of ongoing care will be required.
In Beeler's case, the money she's raising is for getting to the Mayo Clinic in Arizona and living expenses during her time there. Insurance will cover the actual hospital visit, but it's not clear how long she'll be there — Mayo has told her to expect "an extended stay." She and her mom are budgeting for three weeks of food and a hotel room at $89 a night.
"I can stay with my grandparents on the weekends," Beeler says, "but they live so far from the Mayo Clinic, it's just not reasonable for me to stay with them the whole time I'm there."
Raising money is nothing new, but social media and related websites have made personal campaigns more popular and expanded the range of potential donors. Kickstarter, the most well-known crowdfunding site for artists and entrepreneurs, doesn't allow fundraising for health costs or charity. (Make a documentary about undergoing treatment, on the other hand, and that could qualify.) A number of other platforms have popped up to fill that need, from more all-purpose sites like Indiegogo and GoFundMe to health-specific sites like YouCaring and GiveForward.
The team behind FundRazr, the platform Beeler is using, initially expected to see a lot of users setting up campaigns for managing club activities or membership fees, vice president of marketing Bret Conklin says.
"Then we saw that people were using it to raise funds for all kinds of things, and health care was one of the key ones," he says.
More than half the money raised through FundRazr is in the Accidents/Tragedy and Health/Illness categories. Of campaigns that raise at least $200 — less than that usually means the creator never promoted it — the average amount raised is about $1,200. And in the health category, more than a quarter of the money raised comes from complete strangers. "There's starting to be a community of caring," Conklin says.
Of course, with that generosity comes the possibility of fraud. In one recent instance, a Boise-area couple was arrested on theft charges after planning fundraisers to help pay for their 14-year-old daughter's leukemia treatment. It turned out their daughter, who lives with relatives in Seattle, was not being treated for cancer or any other medical problem. Court proceedings have since been postponed pending mental evaluations for both parents.
Conklin says FundRazr has received a handful of complaints, which it investigates, but most campaigns are legitimized by community support. A campaign typically needs to have support from family and close friends before acquaintances, and eventually strangers, see that initial support and choose to donate. "There's a self-policing effect," Conklin says.
Many campaigns never gain much momentum, regardless of the platform or the cause. But the success stories are remarkable: The YouCaring fundraiser for David Warner, a Washington State University instructor hospitalized at the end of March after an altercation outside a Pullman bar, raised more than $20,000 from almost 500 donors — four times the goal.
No campaign has rallied the Spokane community more than the story and smile of Cat Davis, who'd already been through years of expensive treatments for scleroderma when she faced an out-of-pocket cost of $175,000 last year for a potentially life-saving stem cell transplant.
Her brother reached out to her close-knit graduating class from Northwest Christian School, and the group gathered one night to come up with fundraising ideas — bracelets, an auction, a partnership with Dutch Bros., a Cure for Cat 5K. They hoped to raise maybe $50,000 in a year, says CJ Paul, a high school classmate and good friend who was roommates with Davis in Arizona when she first started having health problems.
They coordinated social media outreach with the distinctive purple Cure for Cat logo, Davis appeared on local media, and at some point the campaign took on a life of its own, Paul says. Businesses started approaching them about hosting fundraisers, every news organization featured Davis' story, and the community raised more than $80,000 in a matter of weeks.
"For two or three months we were just scrambling," Paul says.
One challenge of raising money for medical costs is that donors become invested in a story that may not have a happy ending. All procedures have risks, and not all questions have answers. No amount of donations can guarantee that a person will be fully healed. The Cure for Cat team did the best they could to balance full honesty with the bright side of the situation, Paul says. "Cat is a very positive person, so that made it easier for the rest of us to be that way," he says.
In October, right around her 25th birthday, Davis got the good news that her insurance plan would cover the stem cell transplant. She traveled to Chicago for rounds of chemotherapy, and the actual transplant happened in January. She's continued updating the community with her ups and downs — watching her hair grow back, undergoing more tests — and Paul says they're talking about what comes next for the Cure for Cat Foundation. The hope, Paul says, is that a few years from now Davis will be healed, and they can look back at what they learned and help others through the foundation.
Like Cure for Cat, many families organize a combination of online fundraising and real-life events. Social media sometimes is seen as shallow, Paul says, but they couldn't have been so successful without the ability to provide frequent updates and interact with supporters.
"Cat will tell you — Facebook and Twitter saved her life," he says.
On Beeler's Facebook page for her visit to the Mayo Clinic, she and her family post enthusiastic updates and photos of supporters around the U.S.wearing red fundraising bracelets. There's a photo album called "sick kids can have fun too ;)" and another called "the stages of my hair." Beeler has a PowerPoint presentation of her medical history, ready for anyone who's curious, and says she doesn't mind sharing so much about her life and health.
"I've always been pretty open. In middle school I brought my scans to class and showed people." She laughs. "I was like, ‘This is my brain. This is what's wrong with it.' "
Beeler is not too optimistic that she'll get a clear answer from the Mayo visit after years of uncertainty. She worries her family might be getting their hopes too high. Still, she's grateful to anyone who donates to help make the trip happen — even $5 helps.
"If I don't do it, it's a 100 percent chance that I don't have an answer," she says. "But if I do it, I have some chance of an answer."
