A Hoosier family’s struggle could lead to other lives being saved. Bryce Clausen is a one year old diagnosed with a rare genetic disease, and while it is too late to help him, his parents are working with the General Assembly on a new law benefiting others. Because early detection is key to fighting Krabbe disease, legislation I am sponsoring would add it to the list of tests on the state’s newborn screening panel.
Krabbe is a rare genetic disease that destroys nerve cells in the brain and throughout the nervous system, affecting 1 in 100,000 people in the United States. The life expectancy for children with Krabbe is 2 years of age, but infants who are diagnosed immediately and treated early have better chances of living longer, healthier lives. While there is no cure for Krabbe, testing for it as early as possible and starting necessary treatments immediately is the most effective method to save these children.
In addition to Krabbe disease, the bill also calls for Pompe disease and Hurler syndrome to be added to Indiana’s newborn screening panel. Currently, three of Indiana’s neighboring states and 10 others already require these three diseases to be tested for at birth. Hoosier newborns are currently tested for many diseases including sickle cell anemia, cystic fibrosis, hearing loss and critical congenital heart disease.
After unanimous support in the General Assembly, this legislation focused on saving lives can now be considered by the governor for a new law. Although it is under unfortunate circumstances, I am grateful to Bryce and his family for using their struggle to save others. In addition to pushing for this legislation, the Clausen’s are raising money to sponsor a theme room in Bryce’s name at the Peyton Manning Children’s Hospital. To learn more about Bryce’s battle, visit give.stvincent.org/clausen-family-project.
As always, I encourage you to share your thoughts and feedback on legislation as it moves through the process. Contact me with any input or questions at h75@iga.in.gov or 317-232-9643.
