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Sep 3, 2018 Latest post:
Sep 30, 2019
When Myra was 10 days old, we were informed that she had tested positive for Spinal Muscular Atrophy in her newborn metabolic screen. Spinal Muscular Atrophy (or SMA) is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, and breathe. It is the number one genetic cause of death in infants. 1 out of every 6,000 infants are born with this condition. There are subtypes of SMA, and Myra has what’s called “type 1.” This is the most common type, making up 60% of all SMA cases. It is also the worst type-in the past, infants with type 1 SMA were given 2 years or less to live, with no treatments available. In the last two years, a new drug called Spinraza became FDA approved for the treatment of SMA. To keep it short, Spinraza halts the progression of the disease. Thanks be to God, we have hope for Myra to have a healthy, long life because of this medication.