When Pope Francis looked down from the Speaker’s Balcony of the Capitol in September and blessed the children in the massive crowd on the West Lawn, 7-year-old Ellie McGinn was among those the pontiff called “the most important ones here.”
Thanks to Emily Schillinger, a family friend working in then-Speaker John A. Boehner’s office, McGinn was gifted a ticket for the once-in-a-lifetime experience. It was just one of numerous examples of a bipartisan assortment of friends doing what they can to help a little girl living with a genetic and potentially terminal disease — one for which there is no cure.
At least not yet. Beth McGinn, the press secretary for Rep. John Culberson, R-Texas, and her husband, Mike, are raising money to fund research at Johns Hopkins University that could one day lead to a cure for their daughter’s extremely rare disease. They just hit their first benchmark — $60,000 by Oct. 31 — to kick off the research, but they have several more fundraising phases to go to eventually reach $2.5 million.
There are fewer than 100 known cases in the world of Leukodystrophy-LBSL, a degenerative brain and spinal cord mitochondrial disease. That led to unrelenting frustration in 2011 while searching for answers to why their 3-year-old was having balance and energy issues, and eventually trouble walking at all.
Today, Ellie McGinn looks like any other kid, racing around with her friends, though maybe a little slower. But when she was first diagnosed four years ago, it wasn’t clear that would ever be possible.
“We were told originally there is absolutely nothing you can do, she’s going to need a walker and then a wheelchair,” Beth McGinn said in an interview in the Rayburn cafeteria. “And then a lot of these kids, their immune systems get so run down that they die before adulthood, as teenagers.”
But Ellie McGinn has thrived thanks to an amino-acid and anti-oxidant cocktail she began taking several months after her diagnosis. Every six months, her family makes the drive up to Baltimore to have her blood drawn and to see if her medicine requires adjustment.
The McGinns originally set up their website to help other families whose children may be misdiagnosed while suffering from the same rare disease. They heard from families in New Zealand, Brazil, Italy and Russia, whose children are all now on the same cocktail their daughter takes.
And while they’ve helped others, the McGinns have received some assistance, too.
“We have had fundraising help and spiritual support from our Capitol Hill friends,” Beth McGinn said.
The mother of one of Ellie McGinn’s friends works for a Democratic consultant and was able to procure donations for their annual silent auction of Hillary Rodham Clinton-signed campaign swag. The media has pitched in too, with CNN’s Jake Tapper donating a signed copy of his book.
On the Republican side Ellie’s uncle, Doug McGinn, a founding partner at The Herald Group, built the family’s website, ACureForEllie.org . Republican digital firm Targeted Victory has assisted with social media.
Both firms brought teams of runners to the Fairlington 5k, which was started in 2013 by Ellie McGinn’s elementary school gym teacher in Arlington, Va. The race provided the McGinns with $11,000 this year.
That, along with a recent media appearance on the local Fox TV affiliate , which brought in $8,000 within a few days, helped them surpass their first fundraising goal.
“One lady sent me $35 with the sweetest note, a complete stranger,” Beth McGinn said. “We really appreciate it because every little bit is helping. That’s how we’re going to get there.”
For more information on how to help, go to ACureForEllie.org .