Family Experiences
Learn from other families, in their own words, what their journey has been like after a diagnosis. Their stories not only give us valuable insight into how they manage conditions, but also reaffirm that none of us are alone. You can also visit the Baby's First Test Youtube channel for family stories and guides to support your family through the newborn screening process. Do you have a newborn screening story you would like to share?
Liz tell the story of her son, Elliot, who has Homocystinuria. Elliot was missed at newborn screening, which inspired Liz and her husband to become advocates for improving the newborn screening system.
Kiomara Gonzalez tells her family's story with Adrenoleukodystrophy. Her brother's life would ultimately save her son and nephew's lives almost 25 years later.
Lesa honors her daughter's life by advocating for Krabbe to be added to the newborn screening panel in her state.
Mike shares the story of his two sons. After a six-month diagnostic odyssey, Mike's sons were finally diagnosed with Hunter Syndrome. Had they been diagnosed as newborns, their condition could have been much more manageable.
Billy Werner tells the story of her grandson, Lucas, who was born with Critical Congenital Heart Disease
Kay Kelly discusses her experience learning of her son's diagnosis with MCAD and learning about what that means.
Do you have a newborn screening story you would like to share? Let us know!
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