Newborn with SMA

Hi, my name is Cody. The first week of my daughter, Ava's life was one of the most joyful moments I've ever known. On week two, newborn screening revealed that Ava has an extremely rare genetic disorder. Her diagnosis is SMA Type 1. A single phone call turned our world upside down. We're only a month into our journey to save Ava's life and we haven't had a lot of good news. As of yesterday, we have the possibility of a gene therapy that can change the course of her life. She is currently receiving treatment to delay any onset symptoms. Every option with SMA is expensive on top of traveling back and forth to appointments, medications, therapy she will have in the future etc. But who wouldn't do whatever they could to save their child's life? Starting this page feels like my only option. Thanks for taking the time to read my story. A portion of the donations will be donated to help find a cure for SMA and spread awareness. Thank you!

Please visit https://www.curesma.org/