Their two toddlers received dual diagnoses last summer of an extremely rare genetic disorder about which little was known. Jessica and Kyle Davenport almost overnight became the cause’s most ardent advocates, tapping into their community to raise money while praying for any kind of breakthrough that could lead to research funding.

Now the boost they’ve needed may come as an indirect result of President Trump’s repeated campaign promise to donate his White House salary to charity.

Trump hasn’t given away any of his $400,000 annual salary yet, but White House press secretary Sean Spicer said he plans to do so at the end of the year. Then, recently, Spicer floated the idea of asking the media for help picking the worthy charities to stave off any scrutiny of Trump’s choice.

Spicer promises Trump will donate presidential salary to charity

So an appropriate media outlet took Spicer at his word and crowdsourced its readership for charity ideas.

The Chronicle of Philanthropy released the top 10 results from nearly 22,000 individual entries on Tuesday. Landing at No. 3, among well-known and well-funded entities like the Cystic Fibrosis Foundation and the American Civil Liberties Union, was the 10-month-old charity “Kruz’n for a Kure,” which the Davenports created in the weeks after their children, Kruz, 4, and Paizlee, 2, were diagnosed with Schimke immuno-osseous dysplasia, or SIOD.

With only a handful of known cases in the United States, funding for research is practically nonexistent, so there’s limited treatment and no cure. The condition causes kidney disease, a weak immune system, dwarfism and a shortened life expectancy. The chance of two parents being carriers of the mutated gene is 1 in 5 million, and the chance of it affecting two offspring is 1 in 80 million, said David Lewis, a Stanford professor who specializes in immunodeficiency in children. In fact, Kruz and Paizlee are the first siblings to both have it as far as Lewis knows.

Within a month of learning why their toddler son was the size of an 18-month-old baby and that he would in the near future need a kidney transplant, the young couple from Muscle Shoals, Ala., created their charity and reached out to Lewis, who told them it would take millions of dollars in research to understand the underlying biology and then to screen drugs to reverse the symptoms.

In less than a year, they’ve raised $250,000 from their small network in Alabama and all the money is going to Stanford to jump-start that research. The Davenports are not using any of the money for their own personal medical bills, though the cost of care for both children is great, especially on one income. Kyle, 30, is a machinist, and Jessica, 29, gave up her job as a dental hygienist to be a full-time caretaker and fundraiser.

“We’re raising money for a life-or-death situation,” Jessica Davenport said in an interview. “Both my children are affected by these disease. It’s really a sad situation because when it comes down to it, it comes to money. You have to raise a certain amount to give your children a chance at a life.”

When a friend sent her a note about the Chronicle of Philanthropy soliciting charity ideas for Trump’s salary, Davenport didn’t know whether it was real, but she shared the link on her Facebook page earlier this month in case it was. She urged her friends and family to nominate Kruz’n for a Kure. Then this week, she received a phone call from the Chronicle telling her that it had received enough votes that her small foundation was ranked third among all charities.

The Chronicle of Philanthropy sent the top 10 charities list to the White House and to the White House Correspondents’ Association. A White House official said they haven’t set up a formal system for accepting recommendations, but that the president would welcome input and that the press knows how to reach them if they want to offer suggestions.

Whether Trump will use the Chronicle’s list as any kind of guide isn’t yet clear. Last year, a series of Washington Post stories showed that Trump’s charity pledges were not always met and that the money he did give away over his lifetime came from his foundation, which was funded by other people’s donations.

It is common, though, for presidents to give to charities during their time in office — something that is revealed annually when they traditionally release their tax returns. The Obamas, for example, spread money across dozens of charities, giving away about a quarter of their income each year, according to the Chronicle’s review of their taxes.

Stacy Palmer, the Chronicle’s editor, said she hoped their list would give the White House an idea of the broad variety of charities that Americans care about.

“There are millions of nonprofits, I hope [they give] wide-ranging rather than to charities that lobby them,” Palmer said. “If I were advising him, give to the causes that do great work, but then look at the smaller ones. … These are the causes that wouldn’t have appealed to them or gotten his attention. I hope they’ll think hard about what charities deserve it. A lot of people will follow his lead and will give to those same charities.”

For the Davenports, even if they aren’t the recipients of Trump’s money, just getting their small charity’s name on the list among such heavy hitters feels like an answered prayer.

“It’s hard for me to even talk about. It’s a chance at my children having a longer life; you can’t even put words to that,” Davenport said, her voice trembling. “I know as a parent the feeling when you have to raise a whole bunch of money to help your child, and knowing you can’t do anything until you raise an amount of money you can’t even fathom. This is something we’ve all prayed for, just an open door, we prayed for that one opportunity, for someone who can make a difference and help us out.”

And just maybe that someone is the president of the United States.

David Fahrenthold contributed to this report. 

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