When GoFundMe goes wrong: Woman faced losing state assistance after raising money for daughter with aggressive cancer

Every day, more than 10,000 new campaigns are launched on GoFundMe.com, but for one Washington woman, the almost $16,000 she received in donations through the crowdfunding website left her at risk of losing the funding she uses to feed, shelter and clothe herself and her two children.

Demicka (pronounced Deh-mee-kuh) Gilmore, a soft-spoken data entry specialist who lives in Tukwila, Wash., turned to GoFundMe in December 2015 to raise money for a surprise “sweet 16” birthday party for her daughter, Tavi Gordon. At the time, Gilmore, 41, was homeless and staying in the basement of a local church with her other child, son Demetrius Gilmore, 21, and Tavi.

Gilmore started a campaign on GoFundMe to raise $10,000 for the party and to help cover extra costs, including for her family’s upcoming Make-a-Wish trip to London. Tavi suffers from osteocarcoma, an aggressive cancer of the bone that has recurred three times for the 16-year-old. But little did Gilmore know when she started the fundraiser that, while donations received through the website are generally considered gifts, for individuals who receive Supplemental Security Income (SSI)— a federal program that helps eligible low-income individuals deemed disabled cover costs for basic needs— any amount of money raised through the site is considered a type of resource.

Gilmore’s social security caseworker declined to comment for this article, but Gilmore said she was informed that if she accepted the donations, that money would be interpreted as income— and Gilmore would lose her SSI eligibility, which helped cover all medical costs for Tavi. By then, Gilmore said her overall monthly income, which included SSI and child support from Tavi’s father, was about $814 a month. Gilmore also supports Demetrius, who has an intellectual disability and receives SSI assistance. Demetrius had struggled to find a job due to his disability, Gilmore said, and, until August 2015, she had not been receiving child support from his father.

“To make it clear I was not trying to cheat the system or anything like that ... it is not my character even in times of struggle,” Gilmore wrote in an email to FoxNews.com. “All I wanted by setting up the site was to get my kids and I out of homelessness, and not be in struggle mode any longer, while also hoping to put some joy in my daughter's life— something she hasn’t had in a while.”

While stories abound of comparatively wealthier individuals receiving surprise tax statements for donations obtained through GoFundMe, Gilmore’s dilemma sheds light on how causes that are meant to be altruistic can sometimes backfire on those who are most in need.

After Gilmore was forced to have GoFundMe refund the thousands of dollars to the more than 300 friends and strangers who donated, a Jacksonville, Fla.-based nonprofit began trying to re-raise those funds to give Tavi the birthday party and London trip her mother wants her to have.

Meanwhile, Gilmore and her children have secured section 8 housing, and Tavi’s cancer has become terminal.

“She suffered like many others suffer”

When Tavi was diagnosed with osteosarcoma at age 12, she began a slew of treatments, including 18 courses of chemotherapy over 30 weeks, and eventually an amputation of her left leg above the knee that has left her reliant on a wheelchair. Throughout her daughter’s cancer battle, Gilmore has leaned on her faith, and she has maintained temporary jobs that have left her without a steady stream of health insurance. But getting Tavi to doctor’s appointments was not only a time commitment, Gilmore said, but it was also a challenge.

Throughout her daughter’s chemotherapy treatment, Demicka would take Tavi to Seattle Children’s Hospital, about 25 minutes away, using a contracted transportation company, and they lived in a multi-floor building apartment building that required climbing three flights of stairs to get to their apartment.

“That was really painful to watch her limp around,” Gilmore told FoxNews.com in a phone interview. “With the stairs she had to hold on to me and hop up, and that put that stress on my back.”

As Gilmore went from one temporary job to the next, and Tavi— who also suffers from clinical depression— kept up with her classes online in the hospital or from home.

Tavi’s cancer has since recurred three times. Her doctor, Doug Hawkins, a professor of pediatrics and associate division chief of hematology and oncology at Seattle Children’s, said about one-third of children with osteocarcoma will see their cancer recur even with the best of treatment.

“[Tavi] suffered like many others suffer— with nausea and vomiting, and she had to have feedings by an NG tube and have blood transfusions,” Sue Ehling, a nurse practitioner who treats Tavi at Seattle Children’s, told FoxNews.com. “That’s all pretty typical. I think what makes them unique was their financial situation, and the mom being a single mom raising two kids. It just got progressively harder and harder for them.”

“You have to be available for all your appointments,” said Ehling, who added that Tavi was admitted to the hospital three times in a row and had to attend follow-up clinical appointments over a two-week period.

“It’s a lot,” Ehling said.

Hawkins, who described Gilmore as “incredibly loving,” said caring for a child with recurrent cancer “becomes an all-consuming task to take care of them.”

“We need to do what we can as a society to help patients and their children who are under these incredibly difficult circumstances,” he told FoxNews.com.

Tavi’s recurrences have required three surgeries on her lungs, where the cancer had spread. Prior to Tavi’s first lung surgery, on both the left and right, in September 2014, Gilmore quit her data entry job so she could stay home with Tavi.

“It was heartbreaking that she was going to have to go through another surgery,” Gilmore said, “and facing cancer again, and then thinking about her health, and then me not being able to work again, and being at the hospital ... It was real frustrating to me.”

That month, as Gilmore stayed by her daughter’s side in the hospital for the surgery, she called the Washington State Department of Social and Health Services (DSHS) to request food stamps.

The following March, a CT scan of Tavi’s chest during a checkup at Seattle Children’s revealed the cancer was back in her right lung, so she underwent her second surgery in April.

At that point, rent was $825, and in August 2015— when Gilmore had only begun to receive back-pay in child support from Demetrius’ dad— her landlord raised it to $850. Gilmore said she had been receiving some nonprofit support, but the money wasn’t enough. Some of her immediate family lives in Washington— but none of them were able to offer her financial support.

“My mom is on Social Security, and my sister was taking care of her three kids and one is on Social Security,” Gilmore explained.

In September, Tavi had a third surgery on her lungs to eradicate the cancer. And in October, Gilmore moved her family from their apartment into a motel that she said an anonymous donor and Tavi’s school had helped paid for them to sleep at from Nov. 2 to Nov. 17.

“God, at that point, was my source of strength,” Gilmore said.

Next, Gilmore said the city of Tukwila contacted Pastor Jan Bolerjack at Riverton Park United Methodist Church, who took in Gilmore, Demetrius and Tavi, and let them sleep in the basement of the Tukwila church, where they stayed until Dec. 19, 2015. Bolerjack could not be reached for comment.

Feeling like she had nowhere else to turn, Gilmore decided to start the online fundraiser while staying at the church.

“Every month, we had been facing the possibility of being homeless, but I kept reaching out to different organizations, and then the hospital was sending us to different organizations to get help,” Gilmore said, “but at that time, it finally ran out because I was running out of people to get help from.”

“[The money] was nothing I worked for”

Six days after setting up the GoFundMe page on Nov. 22, Gilmore saw the amount raised through the campaign surpass $10,000 and eventually soar to nearly $16,000— all thanks to more than 300 friends and strangers who were touched by Tavi’s plight and Gilmore’s hopes for her daughter.

“I was in shock and overwhelmed with joy,” said Gilmore, who at that point posted a video update on GoFundMe, telling her donors that when she had seen the outpouring of support she had started crying.

But as the page racked up more donations, Gilmore said she learned through separate calls to her SSI caseworker as well as the Washington Department of Social and Health Services (DSHS) that if she took the donated money, she would lose SSI eligibility, and thus Tavi’s food and medical benefits.

Whether an individual stands to benefit or suffer a penalty from using crowdfunding sites like GoFundMe depends on the nature of the donations as well as the amount. But in Gilmore’s case, due to SSI, the amount was more relevant for that outcome.

Christopher Floss, a tax and income attorney at Chicago-based Hoogendoorn & Talbot LLP, said that, under IRS laws, the rule that determines whether money raised through a crowdfunding site must be claimed to the Internal Revenue Service (IRS) is straightforward.

“The concept itself is pretty simple,” Floss told FoxNews.com. “If you’re going to get anything in return for your contribution— specifically, if what you get in return for your contribution is greater than or equal to the gift, the IRS is going to look at that as a taxable exchange. So in that event, the receiver of the income would have to declare that as gross income.”

Floss said he wasn’t personally familiar with Gilmore’s case, but that, taking SSI out of the equation, her income tax liability seems null.

“It sounds to me like this is a bunch of pure gifts by disinterested people who are not receiving anything in return, so that, to me, says these are just gifts,” Floss said.

According to GoFundMe’s terms and conditions, and GoFundMe media director Kelsea Little, most donations received through the site are considered “personal gifts,” not taxable income. That influx of donations has amounted to what Little said are “millions” of campaigns being hosted on the site for people raising money to cover medical costs, vacations, and even basic living needs after a personal tragedy.

But whether Gilmore’s donations were gifts is irrelevant because SSI laws are separate from Internal Revenue Service (IRS) laws, SSA spokesman William Jarrett told FoxNews.com in an email.

People who receive SSI must report any changes in income, resources and living situation, or they may risk losing SSI eligibility.

“You must have limited income and resources in order to receive benefits,” Jarrett said.

“Generally, you can receive SSI if your resources are worth $2,000 or less,” he said. “Resources that we count in deciding if you qualify for SSI include real estate (except for the home you live in), bank accounts, cash, stocks, and bonds.”

Barbara Silverstone, executive director of the National Organization of Social Security Claimants’ Representatives (NOSSCR), an association of attorneys and advocates for the disabled, said that monthly $2,000 cap referenced by Jarrett hasn’t changed in nearly 20 years.

“That’s very low,” Silverstone told FoxNews.com. “Their income also can’t be higher than their SSI amount, which is also low. Even with the amount you count as resources, these people are living so far below the poverty level— even when they’re receiving SSI.”

Silverstone said Gilmore may have been able to reap the benefits of the GoFundMe donations if a friend who is not receiving SSI had created the GoFundMe page and thrown Tavi a party. “But Social Security doesn’t always give the clearest information to the claimants,” she added, “so it was possible that that wasn’t even explained as an option.”

Another option would have been for Gilmore to forgo SSI eligibility for a month and spend all the GoFundMe donations in that month-long period, and then reapply for the program with updated records, which most applicants are afraid to do based on the potential delay of income, Silverstone said.

To avoid losing her SSI benefits, Gilmore said the SSA told her she would need to supply a list of all GoFundMe donors and the amounts they had submitted, and that the DSHS advised her to shut down the fundraising page by the end of December 2015.

“I was confused,” Gilmore said. “I didn’t understand why it was considered income when it was nothing I worked for.”

Ann Mohageri, the Seattle region communications director for the SSA, said she advises all SSI participants to ask their caseworkers about any eligibility stipulation they’re unsure about.

“I don’t know in [Gilmore's] particular case, but in their case the medical care is probably worth far more than the actual dollar benefit,” Mohageri told FoxNews.com. “What’s more important to you? We’re not going to make you choose. You can choose what you want, but you can’t have both.”

Gilmore left the page alone, not touching the money until she could explore all her options, and then asked GoFundMe to refund all $15,673 that donors had raised, which they did on Jan. 16, 2016.

In a statement to FoxNews.com, Little, the GoFundMe spokeswoman, said the company worked “very closely with the Campaign Organizer (Gilmore) to help resolve the situation in the way that worked best for her and her family.”

“No good deed goes unpunished”

A handful of U.S. news outlets covered Gilmore’s story, and Jacksonville-Fla.-based DirectlyTo, a 501(c)(3) caught wind of it, and reached out to Bolerjack at the Riverton Park United Methodist Church to connect with Gilmore. Through their organization, DirectlyTo founder Alvin Kennedy and executive director Kwesi Johnson help individuals jump-start philanthropic campaigns.

What stood out about Gilmore’s story to Kennedy was that she was at risk of losing her medical funding for Tavi, but also because they have personal experience being misled by crowdfunding websites like GoFundMe.

Johnson and Kennedy, both 35, explained they started a campaign through GiveForward.com, another crowdfunding site, to raise money for a friend suffering from multiple myeloma, which is a cancer of the bone marrow. They wanted to help him pay for goods and services like a stationary bike, a special chair, and food for healthy and organic meals. But the friend had been in between jobs and had been receiving government assistance, so his resources cap, like Gilmore’s, was limited. Meanwhile, Johnson was concerned about the site’s model, which is similar to that of GoFundMe’s, as neither is a licensed nonprofit.

“If I’m donating, why isn’t this a tax write-off for me?” Kennedy recalled thinking.

In part, that’s where the idea for DirectlyTo came about, and now the site functions as a place where people who want to donate to a particular cause or person can work one on one with DirectlyTo founders to do so. Donors can receive a tax write-off for their contributions.

With DirectlyTo, Kennedy and Johnson are trying to re-raise the money Gilmore lost when she had to refund the GoFundMe donations, and then they will use it to help her cover essential costs and fund Tavi’s party and London trip, both of which are tentatively planned for spring, Gilmore said.

Since launching the campaign Wednesday, Jan. 13, about 75 backers had raised almost $5,000 of its $15,000 goal as of Thursday morning.

Johnson said he and Kennedy consulted a tax attorney before setting off to re-raise the returned donations.

“As the saying goes, ‘No good deed goes unpunished,’ and we didn’t want to be punished for doing something we could do for this young lady,” Johnson told FoxNews.com.

Gilmore said Tavi’s most recent lab test results were relatively better but that her emotional state has gotten worse.

“She’s more depressed than they’ve ever seen her,” Gilmore said. Tavi’s mental health counselor could not be reached for this story.

Gilmore said Tavi’s doctors at Seattle Children’s have requested that she move up her Make-A-Wish trip to London from July to March.

“[Tavi’s doctors] are worried about something else coming up on the scans by July,” she said.

Tavi’s surprise birthday party— which will include a truck with video games and which Gilmore wants to take place at their local community center— may also take place in March.

Gilmore said she hadn’t yet started planning the Make-A-Wish trip, but that for Tavi’s birthday she hopes her daughter receives one simple yet essential gift.

“Love,” Gilmore said, “because I know that she’s depressed that she doesn’t have close friends and she feels lonely. I hope that it shows that she does have people that care for her.”