Posted on Tue, Apr. 29, 2008

TOPEKA | Getting more babies tested for genetic disorders would be “my Super Bowl victory,” Hall of Fame quarterback Jim Kelly said Tuesday.

Kelly, who played for the Buffalo Bills, was in Topeka to highlight an expanded Kansas program to screen newborns for deadly but often treatable genetic disorders.

“The more we sit back and let this go by us, the more these kids are going to suffer,” said Kelly, who promotes newborn screening through Hunter’s Hope Foundation, named after his son who died in 2005 of Krabbe leukodystrophy.

In addition to hearing in infants, Kansas currently screens for four disorders — phenylketonuria, commonly called PKU; galactosemia; hypothyroidism and sickle cell anemia. But on July 1, that list will expand to 29 disorders.

Krabbe leukodystrophy is not on the expanded list, but is among 25 other disorders that officials hope to include once the program is established.

“Some babies look healthy, but have a treatable disease,” said Sen. Vicki Schmidt, a Topeka Republican who helped develop the program.

In 2007, the Legislature agreed to expand the testing to include conditions such as cystic fibrosis and maple syrup urine disease.

The measure gave Kansas Department of Health and Environment $800,000 this year to get the lab ready. Lawmakers also budgeted $2.2 million for continuing costs.

Jennifer Ferguson is a Wichita mother of two children with cystic fibrosis. The older child, Ashton, was born prematurely seven years ago because of an intestinal obstruction. It was the surgeon who suggested Ashton might have cystic fibrosis, Ferguson said Tuesday.

“If the surgeon had not identified the problem, he might have gone undiagnosed for a very long time,” said Ferguson, who serves on a parent committee that advises the state on how the testing should be conducted and how families should be informed of a positive result.

“I’m just excited that there are going to be many fewer parents struggling with what is wrong with their baby.”