Hunter's legacy lives in new legislation
TOM REYNOLDS Congressman 26th District
One of the most frightening moments a parent can experience is to have a sick child and not know a diagnosis. This is exactly what parents Jim and Jill Kelly experienced with their son, Hunter.

Hunter was diagnosed with Krabbe's disease when he was 4 months old. Had he been diagnosed at birth, his life might have been saved. That is why it is imperative that every child have access to more screening tests at birth to afford parents the opportunity to seek treatments as early as possible.

Each year in our nation, at least four million newborns are screened. Out of these screenings severe disorders are detected in 5,000 of them. These disorders are often life threatening and can cause serious mental and physical disabilities if left untreated. Early detection by newborn screening can completely prevent progression of some disorders if medical intervention can be started early.

In fact, New York State has long been a national leader in newborn screening, starting in 1960 when Dr. Robert Guthrie developed the first newborn screening test in Buffalo. Now, New York tests each child for 44 different conditions, putting our state at the forefront.

However, there is no universal standard for newborn screening. In 2004, the American College of Medical Genetics completed a report commissioned by the U.S. Department of Health and Human Services which recommended that, at a minimum, every baby born in the United States be screened for a core set of 29 treatable disorders. Currently, only 19 states and the District of Columbia require infants to be screened for all 29 of the recommended disorders. A child's life in one state should never mean more or less than a child's life in another. Every child born with a disease, whether it is common or rare, should receive early diagnosis and treatment.

In Congress, I along with Sens. Clinton and Dodd, and other congressional leaders, have passed legislation that will give parents more screening services and more information so their child has every chance available to lead a long and healthy life. The Newborn Screening Saves Lives Act was recently signed into law by the president. The law will allow for the expansion of newborn screening programs at the state level. It also will create a clearinghouse of newborn screening information to increase understanding of newborn diseases and offer research funding to develop new tools for additional life-threatening disorders.

It is my sincere hope that through the grants and research funding provided for in the Newborn Screening Saves Lives Act, every state will be able to coordinate their newborn screening tests in order to bring consistency across the country.

Despite being told their son would have just months to live, Jim and Jill shared eight fulfilling years with Hunter. Along with Hunter's grandmother, Jacque Waggoner, they have been tireless advocates on behalf of enhanced newborn screening and should be commended for their tremendous efforts to raise public awareness about this vital issue. Hunter's life was the inspiration for this legislation and is a tribute to children and their parents who have had to face the pain of experiencing a disease that wasn't caught by newborn screening.