Gloria's Story Homepage

Gloria is one of those one in a million kids, as the tongue and cheek joke of parents of children with Rare Diseases goes. She is a happy challenge of a kid. Like many of these special kiddos she has done lots of things we were told that she would probably not be able to do. Raising her is exceedingly difficult and I can best equate it to constantly having a sick newborn that cannot sleep, and when she is really sick it is even more of a challenge. It most assuredly takes a village to keep Gloria going.

Why make this website? Well I have been active in lots of online communities and find myself referring to the same articles, videos, and advice frequently. I figured I would share the best information I have with the different communities I am part of: Infantile Spasms/West Syndrome, Genetic Epilepsies, CFC Parents, and Feeding Tube Awareness. My hope is to gather the best information I can to help ease the process of decision making for other parents. Also, as with any parent I want to share and remember the moments, because due to sleep deprivation I am already forgetting much of what has happened over the past few years.

If you are interested in donating to help children with this syndrome, or if you just want to learn more about Cardio Facio Cutaneous Syndrome you can head to the international organization's website at: http://www.cfcsyndrome.org/