Brave girl's legacy lives on through legislation

In just 10 years, a little girl from Leesburg left a lasting legacy.

What Gabriella Miller lacked in age she made up for in influence, providing the inspiration for legislation steering more money to pediatric disease research that recently won the approval of an oft-gridlocked Congress.

Today, President Barack Obama will sign the Gabriella Miller Kids First Research Act, motivating parents and advocates to continue their work.

House Majority Leader Eric Cantor, R-7th, and Democratic U.S. Sens. Timothy M. Kaine and Mark R. Warner, pushed the legislation through the House of Representatives and the U.S. Senate and will attend the bill signing along with Gabriella’s family.

Gabriella lost her fight with brain cancer before the bill was passed, but she contributed to a legislative victory that could benefit other children waging their own health battles.

For Gabriella’s mother, Ellyn Miller, the bill signing will be bittersweet.

“I do stop and recognize that this is huge,” she said of the legislation’s passage. “But we have so much work to do.”

The act directs about $126 million to be shifted over 10 years from the Presidential Election Campaign Fund to pediatric medical research at the National Institutes of Health through its NIH Common Fund.

That fund was created for programs that require participation by at least two NIH centers, or programs that would benefit from strategic coordination, according to the NIH.

The first time Katie Schools lobbied for more attention to pediatric research, she was in a stroller, Susan Schools, Katie’s mother, said in an interview this week. Katie, who has a brain tumor, is among the children who could benefit from more targeted research into pediatric cancer.

Katie is now 13 years old and a seventh-grader at Short Pump Middle School and travels to St. Jude Children’s Research Hospital in Memphis, Tenn., for treatments. She is in a clinical study on a drug that was originally designed to fight cancer in adults.

Her family was first pressed into political action after their insurance company denied them the ability to have a second opinion following an unsuccessful surgery to remove her tumor, Schools said.

Katie and her family have continued advocating for more funding for pediatric research, waiting to find the moment when all the pieces would come together and spur action.

“To hear that our two Democratic senators were on board was beyond exciting,” Schools said, after having worked with Cantor’s office on the legislation working through the U.S. House of Representatives.

“It was very refreshing, and it made me incredibly proud as a Virginian to know they came together and they made this happen.”

Cantor shared Katie’s story in a speech he delivered in February 2013 at the American Enterprise Institute. Katie attended that speech and has interned in his office. After his speech, Cantor saw a video of Gabriella, met with the Millers and asked if a pediatric research funding bill that had already been introduced could be named in her honor.

“She was there pleading for help for kids such as her who have been diagnosed with terminal brain cancer and just wanting and wondering why there couldn’t be more help,” Cantor recently told reporters.

“So she really became the inspiration for the effort,” he said.

“It really, I think, represents an opportunity where folks of very different views on many issues can actually set them aside for once to come together to do something good.”

Once the bill passed the House, Cantor reached out to Kaine seeking support for the measure to get it through the Senate.

Kaine was drawn to the effort after meeting with the Millers and hearing their story as well as information about the status of pediatric research funding. And, he said, it was an opportunity to work across party lines, and with a member of the House.

“I was very impressed that they were channeling their grief at her loss into something productive, but I was also really struck by basic facts, in particular how little of our NIH-type health research is directed in a focused way at pediatric conditions,” he said in an interview Wednesday.

Kaine heard a few objections to the measure, including that the about $12.6 million a year was not a huge sum of money relative to some of the reductions brought on by sequestration.

“The fact of needing to do more on sequester relief shouldn’t blind us to the fact that this bill will itself do significant good,” he said.

Warner backed the measure as well, and a spokesman for the senator said that once the legislation is signed into law, Warner’s top priority is persuading the leaders of the Senate Appropriations Committee to fund the $12.6 million.

Cantor announced in February that he plans to seek additional federal funding for the NIH. He said that he will request the additional funding through the congressional appropriations process and that he plans to get the money by suggesting reductions in spending for other federal programs.

Gabriella was diagnosed with an inoperable brain tumor at 9 years old and became a vocal advocate for pediatric cancer awareness. She passed away in October at age 10.

Her brain tumor was the size of a walnut, and as a symbol of the fight against her cancer, her family began smashing walnuts with a frying pan. They established the Smashing Walnuts Foundation, which focuses on finding a cure for childhood brain cancer.

Before she died, the young girl, so seemingly wise beyond her years, taped a captivating video. She says one of her fears is that a child will die before they have to.

“If I go, if I lose my battle, then I’m going to want other people to carry on with the war,” she said. “They’re going to win this war.”

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