Our daughter was diagnosed with SMA 4 months later after exhibiting symptoms and missing motor milestones.
Our family’s connection to newborn screening is not a success story. Our daughter is, by all likelihood, the last SMA baby born in Virginia not diagnosed through newborn screening. Fortunately for other SMA children born in Virginia, they will be screened and as a result, will have far better outcomes and mobility. Our daughter was born January 11th, 2022. She was diagnosed with SMA 4 months later after exhibiting symptoms and missing motor milestones. We learned of SMA while researching possible causes for her symptoms. We initially thought she had been screened, but learned she had not via a press release from the new Governor announcing implementation of SMA screening, only weeks after she was born.
