Jill and Jim Kelly and their son Hunter; Photo Courtesy: Associated Press
Buffalo, N.Y. - Jim Kelly spent Wednesday in Washington fighting for a cause close to his heart: medical screenings for newborns.
The Newborn Screening Saves Lives Reauthorization Act of 2013 assures federal funding so newborns can receive a blood test for fatal diseases that, if caught early, can be diagnosed and treated early. If the bill is not reauthorized by Sept. 30 the federal funding for newborn screenings could end.
Renewing the bill would assure funding for another five years.
Thanks to the Act, 44 states and the District of Columbia now test newborns for 29 different diseases.
Said Kelly, "With the reauthorization of this bill we don't want to stay status quo, we want to move forward, we want to make sure that we save kids' lives, we don't want to just stay where we're at."
Kelly's son Hunter died at eight years old in 2005 from a fatal genetic disease that, if caught early, can be treated. Kelly became an advocate for newborn testing when his son was diagnosed with Krabbe Leukodystrophy.
Doctors believe that early detection of diseases can lead to better treatment and can potentially save lives. Tests are currently conducted on 250,000 babies born each year in the state.