Expanded Screenings on Tap for Kansas Babies

It's a move that could mean a better life for Kansas babies.

Starting July 1st, required screenings for newborns will expand from four diseases to 29 diseases.

NFL Hall of Fame Quarterback Jim Kelly joined Gov. Kathleen Sebelius and State Sen. Vicki Schmidt of Topeka at the Statehouse this week to applaud the move. Kelly talked about his son, Hunter, who died at age eight-and-a-half of Krabbe Leukodystrophy.

Kelly says they learned that if Hunter had been tested at birth, they would have been able to treat the condition and helped him have a quality of life. Through their research, the family then learned that New York, where they lived, only required testing for 11 diseases, while state's like Mississippi and Hawaii tested for 44. Kelly and his wife soon made it their mission to expand testing of newborns in all states.

Dr. Steven Crouch, a pediatric hospitalist at Stormont-Vail HealthCare in Topeka, says many of the illnesses to be tested for are rare, so many times, no one's looking for them. While rare, some of the new diseases on the list may be familiar, like cystic fibrosis. Crouch says most don't show symptoms until the damage is already done, which is why screening is so important. Even if it's something that can't be treated or prevented, Crouch says, doctors may be able to take steps to make a child's life easier or better, and to help the family know what to expect.

Crouch says the cost of screening tests has come down. Plus, he says the testing is easy - just a heel stick to get a few drops of blood is all the lab needs.

Kelly hopes all states further expand. He says it will be his Super Bowl victory when he sees all kids having a chance.

While kelly says 29 diseases is a great step, he and Crouch agree more can be done. For example, Krabbe disease still won't be on the list of required screenings in Kansas. It was added in Kelly's home state of New York in 2006.

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