Save Babies Through Screening Foundation
The mission of the Save Babies Through Screening Foundation is to improve the lives of children and their families, by working to prevent disabilities and death resulting from disorders detectable through newborn screening tests. The Foundation's goal is to see that every baby born in the United States is screened successfully, effectively, and comprehensively.
Save Babies Through Screening Foundation educates parents, pediatric healthcare providers, and policy makers about available comprehensive newborn screening, the importance of obtaining positive or other test results requiring follow-up actions within 5 days of birth, and the importance of prompt confirmatory testing and treatment/management when needed.
We joined the Tyler for Life Foundation (now Save Babies Through Screening Foundation) so that we could help educate parents and medical professionals on expanded newborn screening available. Every child with MCADD and other fatty acid oxidation disorders deserves the same bright chance our son has, and no one should ever have to lose a child to a disease that can be treated so easily.
Alena & Mia Rose's Story
Our children are healthy only because of Newborn Screening – I do not want to imagine where we would be today, or what would have happened had Oregon not tested for galactosemia on the Newborn Screening.
Newborn Screening saved Piper's life. Instead of grieving that Piper has a metabolic condition that requires us to watch carefully, we choose to celebrate that Newborn Screening detected her MCADD, and that she is still with us living a happy and healthy life.
Today Lucas is a happy, healthy 4 year old that loves to scooter, play with friends, and listen to stories. He has a speech delay but is fine otherwise. Without newborn screening he may have died. At very least, his quality of life would have been greatly affected. Every day we are thankful for that little heel prick!
Despite the challenges, we are thankful that our state implemented this test when they did. If they had not, he would of become more ill rapidly with no answers or explanation. Every state needs to realize that this test is a MUST.
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