I joined recently. I have a son who has been severely injured in the womb by this awful virus. He is now 34 years old and I always wished to find a connection with other families. I have always felt like a part of my life was like living alone on an Island, even though I had contact with other people with disabilities. Being able to connect with these other families has been so useful in understanding what happened more fully to my son.
As an older parent I am learning from the younger ones, many of whom are younger than my own children and I hope as an oldie I can benefit them at times.
Our daughter was born with cCMV 15 months ago. We had never heard of CMV before our lives were changed by it. We spent several months feeling alone. We tried to talk to doctors and therapists to try and help us connect with other families with children with cCMV without any success. Finally, my wife connected to Tracy with the Brendan B. McGinnis Congenital CMV Foundation and within hours was plugged in to a network of other families who understand what we are going through and have been able to guide us through some of the challenges of raising a child affected by cCMV. Thank you for what you do!
My son is now 11 years old and was born with Congenital CMV. It wasn't until he was 10 years old that I found this foundation. For 10 years I felt completely alone. Through the CMV foundation I am now connected with literally hundreds of CMV families world wide and can get almost any CMV question answered with-in minutes thanks to the vast on line network of other CMV affected families and professionals. Without the CMV Foundation, I would still be alone.
The Brendan B. McGinnis Congenital CMV Foundation is dedicated to the CMV Families, raising awareness and CMV Vaccine Research. We found this foundation on the web when my son was finally diagnosed with cCMV at almost 3 years old. They have connected us with so many families affected by CMV all over the world. Being in the military and having this foundation on our side always will mean that wherever we will be next, we can connect with other families near by and will never feel alone again in this struggle.
The Brendan B McGinnis foundation was a god send to us,found them on face book and untill we connected with them we were SO alone,our granddaughter has CMV and no-one had even heard of it! We were at a loss,we didnt know where to turn or what to exspect and we as grandparents & parents felt HELPLESS to help our sweet lil girl.Thanks to the foundation we have been steered to Doctors,therapests and alot of moral support & advice..THANK THE LORD for these folks,theyre such a god send,cant say enough good things about them.