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Most Babies With This Rare Genetic Disease Are on Ventilators by 8 Months. This Austin Baby Beat the Odds
Noah Strauch loves to laugh. He loves to put things into a bucket and dump them out again. He crawls so fast, his parents have difficulty keeping up with him. And he loves strawberries and chocolate milk. The 15-month-old most likely would not be crawling or dumping things into and out of a bucket if the newborn screening program in Texas had not added spinal muscular atrophy to the blood tests infants get at 1 day old and again at 2 weeks old.
The screening program was added just 88 days before he was born. Noah was the first baby in Texas to be identified with spinal muscular atrophy — commonly known as SMA — through newborn screening. A month to the day after his birth, he received gene therapy that is expected to prevent him from suffering the effects of the disease throughout his life.
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