Air Force Veteran Steve Snow and Michelle Moon have not lived a normal life as parents since the birth of their daughter, Juliana. What was meant to be a joyous time for them as parents turned dismal when they learned their infant suffered from an incurable neurodegenerative disorder that has had her in and out of the hospital her whole life.

Juliana has a severe case of Charcot-Marie-Tooth (CMT) disease-a disorder that impacts the peripheral nerves, outside the brain and spinal cord, and supply the muscles and sensory organs in the limbs. CMT at first dedebilitated her arms and legs, but now it’s targeting the nerves that control her breathing muscles, according to Fox News and doctors predict that something as minor to most such as as the common cold could trigger a bout of pneumonia that could kill Juliana.

The disease itself and Juliana’s battle with the disorder has not been a focus of debate but her parents recent comments have sparked opinions as of late. Juliana’s mom and dad, Michelle and Steve asked their daughter last year, if she would want to go to the hospital the next time she becomes dangerously ill, or would she want to stay home, where she would die.