LOUDOUN COUNTY, Va. -- The first visit to the White House for Mark and Ellyn Miller, and their son Jake will be bittersweet -- they'll watch as President Barack Obama signs a pediatric research bill named for their 10-year-old daughter, Gabriella, who died in October 2013.
After Gabriella Miller was diagnosed with a walnut-sized brain tumor, she and her family launched a tireless campaign to raise awareness and money for childhood cancer research through their Smashing Walnuts foundation.
Thursday afternoon, the Millers will be in the Oval Office, watching the president sign the Gabriella Miller Kids First Research Act into law.
"The White House called to say 'We need your information; we'd like to welcome you guys to the signing ceremony,'" Mark Miller tells WTOP.
House Majority Leader Eric Cantor, R-Va., and Senator Tim Kaine, D-Va., were instrumental in getting the bill through Congress.
"The new law will redirect about $126 million over 10 years that right now goes to fund presidential party conventions," says Miller. "Instead of that, it's going to fund pediatric disease research through the Common Fund at the National Institutes of Health."
A bittersweet moment
During Gabriella Miller's months as a forceful advocate for cancer research, she met local and state politicians, including then-governor Bob McDonnell, says her father.
"She got to go to a Selena Gomez concert -- that was probably more important to her than actually meeting the governor," says Miller.
Does Miller believe his daughter would have been intimidated meeting President Obama?
"I think she'd say 'I like what you've done with the place, but when I move in I'm going to make some changes,'" says her proud father.
"She would have no problem engaging the president and lobbying him for more funding," says Miller. "It's just who she is, how she always was -- she would have absolutely no issues speaking her mind to whoever asked."
Although future pediatric research will be funded in his daughter's name, Miller acknowledges the family's White House visit will inspire mixed emotions.
"It goes without saying, but I'd trade meeting the president just for a day with my daughter," says Miller.
"Given the situation we are in, it is bittersweet, and we are honored to know that Gabriella will always be remembered," says Miller.
Stop talking and start doing
Tiny in stature, Gabriella Miller's voice stirred many when she delivered a message to Congress on YouTube: "Stop talking and start doing."
"She's a strong-willed little kid," says her father.
Mark Miller says the law named for his daughter will allow NIH flexibility in prioritizing which pediatric diseases should be focused upon.
"As parents of a cancer victim, we'd like to see more toward cancer research and brain cancer research," says Miller. "It's a great start, and this will allow research for autism, Fragile X (a genetic condition involving changes the X chromosome), and a whole variety of pediatric diseases that are unfunded because there's not as many kids that have them."
Miller acknowledges that many young people have died from the same disease that stole his daughter's future, without the attention she and her family commanded.
"So this is not just for Gabriella," Miller says. "This is also for the other kids, all around the world, that have suffered the same fate, that aren't written into the Congressional Record.
"We're doing this for them as well."
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