Gloria was diagnosed by a Gene DX study in April of 2014. The study did not get to us until August of 2014 due to a snafu at Kaiser. The diagnosis gave our family direction and a great support network to begin to help Gloria with a better idea of what we need to do for her.
If you want to find out more about the syndrome or make a donation contact CFC International.
You can also support CFC by shopping through amazon smile and choosing CFC International as your charity of choice http://smile.amazon.com/.
For parents or caregivers of CFC Children two great resources are the Facebook CFC Parents group and the CFC Yahoo Group.