SEATTLE — Nearly $500,000 raised for a Washington woman’s bone marrow transplant seemingly vanished when a nonprofit abruptly shuttered.
Now, they are arguing the money she and thousands of others crowdfunded was never theirs to begin with.
Laurie Haynes Arguello from the city of SeaTac is among many across the nation feeling blindsided.
"I was shocked," Arguello said. "I was shocked. I found out by going on the website and finding that they had closed... where's the money? Is my question.”
Arguello is no stranger to feeling blindsided: 23 years ago she got the shock of her life.
"I thought I had a cold," Arguello said. "The flu. I wasn't feeling well."
But it turned out Arguello had a very rare condition called aplastic anemia.
"They ended up admitting me, because my red cells, my platelets, and my white cells were very, very low," Arguello said.
In 2001, her doctors told her the only procedure that could help her live was a bone marrow transplant. It would cost $160,000 just to get on the registry.
"We were talking with my dad and said, ya know, 'What are we gonna do?’" Arguello said.
She said a patient advocate at Fred Hutchinson Cancer Center in Seattle handed her a brochure for the National Foundation for Transplants. Its longtime mission was to help patients crowdfund for their medical costs.
This was well before the days of GoFundMe.
"They put a link on the website so people could donate for my cause," Arguello said. "Anything medically transplant-related, I was able to submit a form and get reimbursed for it."
In 2004, Arguello raised enough money to not only afford her procedure but have hundreds of thousands left over.
"There was over $400,000 left," Arguello said. "I thought would be there for me for the rest of my life."
This April, the nonprofit suddenly "ceased operations,” according to their website. The money Arguello thought she had left over was no longer accessible.
"All of a sudden it’s all gone?” Arguello said.
Their former website domain Transplants.org, appears to have been purchased by another group. All that’s left is a banner with a static FAQ page reading, “Neither you nor any donor has personal ownership or financial accounts with [the foundation].”
The National Foundation for Transplants did not return KING 5's request for comment, but questions linger. For example: "When did they stop taking donations?" asked Arguello.
Their FAQ page reads, "Tax laws and IRS regulations prevent the earmarking of any donation.”
KING 5 fact-checked that, and it’s true. According to IRS Publication 526, donors of tax-deductible funds cannot "indicate that [their] contribution is for a specific person."
But whether the foundation was upfront about that is unclear.
"Did they promise you that there would be an account in your name?" we asked Arguello.
"Yeah," she said.
Arguello no longer had her contract from two decades ago, but we obtained a similar policies and procedures agreement from a different Washington patient from around the same period. We showed it to Stacia Hofmann, a Seattle-based contracts attorney unaffiliated with this case.
"Certainly someone wanting to raise this issue could say, 'I didn't choose this language,'" Hofmann said.
The document simultaneously notes that the donations are "designated for the patient’s transplant-related expenses," while also stating those donations, "go to a 'general bank account.'"
"I think it is contradictory that there's reference to... a kind of patient account, versus the general account," Hofmann said.
Later in the document, Hofmann spotted the words “lifetime commitment."
"A judge would be very concerned of using such strong language," Hofmann said.
The agreed-upon terms also stated, "Funds collected for a patient will remain in his/her account for life."
You may be wondering: how did Arguello raise so much money in the first place?
"It was their way to give back to Dad," Arguello said.
Turns out Arguello is a survivor-- because of survivors.
A Washington pilot named Captain Al Haynes of United Flight 232 became famous in 1989 after one of the worst plane crashes in American history. There were 296 people on board going from Denver to Chicago when a defect on the plane Haynes was flying caused its rear engine to explode, and its hydraulics lines were cut.
"Anything that controlled the movement of the airplane, we lost," Haynes told KING 5 in an interview several years ago. "We put our best resources and knowledge together and did what we thought was best.”
Haynes pulled off what would later be called “the impossible landing.”
While 112 people died in the fiery crash, 184 people -- the majority -- lived. Survivors like Yisroel Brownstein called Haynes their hero.
"I would not be alive without Captain Haynes," Brownstein said.
Haynes has a special connection to Arguello. He’s her dad.
"He's always been my hero," Arguello said.
Just like how her dad made the impossible, possible, for 184 people, those crash survivors returned the favor and started donating and raising money for her crowdfunding page on National Foundation for Transplants.
"I felt compelled to do something about it," Brownstein said. "We wanted to band together to do whatever we could.”
“We had set a record for the largest campaign," Arguello said.
Brownstein told KING 5 that in the early 2000s, he called the National Foundation for Transplants twice to make sure his funds would go only to Arguello.
"I was reassured that there were two reasons, two reasons," Brownstein said. "Number one, the money was going to go directly to her. Number two, it was a way for her to organize her medical expenses."
Since the foundation's closure, Arguello and at least one other Washingtonian have issued a complaint to the Attorney General of Washington's Consumer Protection Division.
Is any recourse available for patients like Arguello?
"What I'm about to say should not be relied upon as legal advice," Hofmann said. "In my opinion, kind of the best situation that could happen maybe for these people is to go to a bigger firm where maybe there's, like, a Pro Bono arm... you might be able to pool resources.”
Amid the wait for answers, Arguello is less concerned about her health and finances.
"I'm healthy and I'm very lucky," Arguello said.
Laurie Haynes Arguello and her family
She said she is more concerned for the patients with remaining balances who are still in need.
"They're sick," Arguello said. "They need the help."
Arguello's dad died an aviation hero in 2019.
"He would be so mad," Arguello said. "Ugh. He would be very upset."
Now five years later it's only fitting that his daughter is channeling his courage.
"There has to be something that can be done," Arguello said.
A Fred Hutch spokesperson returned KING 5's inquiry but said they are not able to inform us of how recently their center was recommending patients to the National Foundation for Transplants.