HENRICO COUNTY, Va. (WTVR) — A Henrico family who has worked tirelessly for more medical research funding for children with life threatening diseases is receiving an early Christmas present.
Legislation just passed the U.S. House and now makes its way to the Senate that takes money away from politicians and directs it to sick children instead.
Blowing out the candles on his 5th birthday cake, Nicholas LaGanke probably isn’t wishing for the same thing his mother is.
Nicholas’ mother, Traci, says her son dreams of playing with firetrucks and his older brother. Traci says she simply hopes that her young son lives a long, healthy and one day, independent life.
“What’s going to happen to my child when I’m not here, when I’m no longer around to care for him?” LaGanke says.
Nicholas has Down Syndrome, a medical condition that drastically increases his chances of heart defects, Leukemia and Alzheimer’s Disease.
For most of their son’s life, Nicholas’ parents have been fighting for more medical research for children with Down Syndrome and other life-threatening diseases by educating lawmakers on the current funding levels for pediatric research and the lack of resources for parents.
“We want to make sure we surround him and protect him,” Traci LaGanke says.
The LaGankes met with lawmakers on both sides of the political aisle, including U.S. House Majority Leader Eric Cantor, (R) Henrico. Despite strong differences in Congress on several issues, the medical research funding legislation seemed to generate strong bipartisan support.
“Can’t we put down the battle axes for something like this?” Cantor pleaded with fellow lawmakers just prior to a vote on December 11th.
In a 295-103 vote, The House of Representatives overwhelmingly passed the “Gabriella Miller Kids First Research Act.”
The legislation terminates funding for political party conventions and redirects 126 million dollars over the next ten years to pediatric medical research at the National Institutes of Health through the NIH Common Fund. It prioritizes taxpayer funding for scientific research of pediatric diseases such as cancer, autism, Fragile X and Down Syndrome.
The bill is named for Gabriella Miller, a 10-year-old Leesburg Virginia girl, who died from brain cancer this past fall.
“My biggest fear is some really little child is going to die before they have to, and then that I’m going to die,” Gabriella said.
In her short life, Gabriella tirelessly fought for stronger medical research funding.
In an emotional last interview for a documentary with “Truth 365,” Gabriella said, “If I die and I lose my battle, I want other people to carry on. They’re going to win this war and I’ll be with my friends in a good place.”
It was the plea of this little girl and the urging of other families like the LaGanke’s that prompted Majority Leader Eric Cantor to push the legislation through.
Earlier this summer, Cantor attended the Special Olympic Games in Richmond to show his support for the LaGanke family and to learn more about their plight.
“Nicholas is such an unbelievably bright young man,” Cantor said.
Despite the pouring down rain that cancelled the games, Nicholas and his older brother competed anyway, splashing through puddles and laughing while hugging.
“Whatever Nicholas wants to be when he grows up, I want to be that too,” said Jacob LaGanke. “So we can never be separated.”
That dream, Traci LaGanke says, now appears a little closer to reality because of new medical funding for pediatric research.
“Jacob’s prayer everyday is ‘please let him speak clear when he grows up,’” LaGanke says. “That’s his biggest desire, for his brother to talk.”
Their mom says just so they can share secrets and dreams for a future together.
“There’s so many it’s going to impact,” LaGanke said.