Through the newborn screening, Cora Coleen has been diagnosed with Spinal Muscular Atrophy (SMA), type 1. SMA is a rare neurodegenerative genetic disease that affects motor nerve cells in the spinal cord that control muscles essential for daily activities such as breathing, eating, walking, etc.
SMA is number one genetic cause of death for infants. Prior to 2017, no treatment options existed for babies with SMA. Fortunately, medicine has advanced enough that treatment options exist today, and when paired with early intervention, have had positive outcomes. On February 15, 2022 she began to receive her loading doses of Spinraza. On May 10, 2022, she received Zolgensma gene therapy.
We don’t know what God has in store for our beautiful girl, but we know His plan is better than ours (Proverbs 19:21). Our little girl is changing lives as part of God’s story. Please join us in prayer as we continue on Cora's healing journey.
For more information on SMA, please check out https://www.curesma.org/
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