Carl was born on August 17, 2004. Our third child, he was embraced, cherished and abundantly loved from the moment he was born. Two weeks after his birth we grew concerned because his left arm suddenly became “floppy”. We naively thought that perhaps we were bundling him too tightly. Soon thereafter, however, his right arm became limp, followed by both legs. We also noticed that he was breathing mostly using his belly muscles -- and at a very rapid rate (between 77 and 85 breaths per minute). At his one month checkup, his pediatrician recognized these as symptoms of Spinal Muscular Atrophy Type 1. And, after diagnosis was confirmed through genetic testing, we began the intense and focused journey of caring for our son whom we now understood to have a fatal neuromuscular disease.

 

We enrolled him in a clinical trial for a promising new treatment, and Carl responded well initially. Any subtle movement he regained was met with hopes that perhaps he might survive until a cure was found. However, his SMA was extremely severe. In December, after losing the ability to coordinate the muscles needed to suck and swallow, Carl began to lose weight and his health rapidly declined. Then, on January 13, 2005, after 4 months and 27 days of courageous living, his weakened respiratory muscles could no longer sustain him and he died in our arms. We are forever changed for having had our little Carl for those months; the indescribable loss of his precious life will mark us forever.