Cherry: Bryce’s legacy will save other Hoosier babies

Posted by: Lydia Kirschner  | Monday, April 29, 2019 9:43 am

The first law enacted by the Indiana General Assembly this legislative session will help save the lives of Hoosier babies. Senate Enrolled Act 41, which I co-sponsored, will expand the number of newborn screenings to identify more genetic diseases and conditions earlier, so that babies can have a better chance of survival.

The law requires Krabbe, a rare genetic disease that destroys nerve cells in the brain and the nervous system, to be added to the list of screenings Hoosier newborns receive shortly after birth. This legislation, also known as “Bryce’s Bill,” was inspired by Bryce Clausen, an Indianapolis 1-year-old who was not tested for Krabbe at birth and his diagnosis came too late for treatment. Bryce unfortunately passed away recently, but his legacy lives on. Because of Bryce’s story and his parents’ advocacy for a new law, babies born with this genetic disease have a better chance of receiving help before it is too late.

Even though there is no cure for Krabbe, there are treatment options available for children diagnosed before symptoms start to appear. Once symptoms show up, a child’s life expectancy is 2 years of age and the condition will progress leaving babies in extreme pain.

Pompe disease and Hurler syndrome will also be added to the list of newborn screenings. Pompe is another genetic disease that inhibits the body from breaking down complex sugars, which can lead to muscle breakdown, and respiratory and cardiac problems. Hurler is a genetic disorder, which can result in organ damage, skeletal abnormalities and cognitive impairment.

Adding Krabbe, Pompe, and Hurler to the newborn screening panel will give babies born with these conditions and their families a chance to fight them. By expanding newborn screenings, we hope to save more Hoosier babies by identifying these conditions as soon as possible and administering medical treatment. Visit iga.in.gov to learn more about Senate Enrolled Act 41. For questions or input, please call 317-232-9651 or email H53@iga.in.gov.

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State Rep. Bob Cherry (R-Greenfield) represents House District 53,

which includes portions of Hancock and Madison counties.

Click here to download a high-resolution photo.