My daughter, Jena, was born with a rare genetic disorder called Congenital Central Hypoventilation Syndrome (CCHS).  This syndrome is caused by a mutation in the Phox2b gene. The Phox2b gene controls the whole autonomic nervous system.

While this syndrome affects multiple functions of the central nervous system, Jena’s main symptom is the inability to adequately breath while sleeping.

This makes her ventilator dependent during periods of sleep.

If you are interested in learning more about Congenital Central Hypoventilation Syndrome, The CCHS Family Network offers support, information and education here)

Ellen Whisman
Roseville, Michigan