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.
I became involved with the Brendan B. McGinnisCongenital CMV Foundation because I too, have a son who is disabled due to the virus. I have participated for 4 years in the annual Walk-n-Rollathon in the Atlanta area and organized it this past year. My son is 29 years old and there was very little information available at the time of his diagnosis and for many years. The community outreach and educating the public is so important. Tracy is doing a wonderful service for the community by working to make the public aware of CMV and to raise donations to support research for a vaccine.
The Brenden B McGinnis COngenital CMV Foundation has been crucial in getting information out to the public, both the general public and professionals too about exactly WHAT this condition is and what it means to both the kids who have CCMV and their families. They have both also promoted, and helped fight for necessary research to develop a vaccine against cCMV. Both Tracy McGinnis and Chris Cady have children disabled by this virus so they know first had what the families who are affected by this virus are going through. They have offered both emotional and educational support to myself as my daughter who is now 7 was born with cCMV. Until finding this foundation, i felt alone in our fight unsure if the direction we were heading in was "normal" or if there was things going on with my child that i was unaware of, or what I should be looking for. My pediatrician has never knowingly treated a cCMV child, so we were both kind of "winging it". Now, with the support and network of this foundation, i know things that other parents have experienced with their children, what other doctors are saying and doing, and I feel that my child is on the right track towards the best future she can possibly have. My thanks to both Tracy Mcginnis and Chris Cady to take such an experience in their lives and share the inforation, experiences, and friendship with others so we dont all feel so alone in our battle to win the fight against congenital CMV infection.
Tracy McGinnis and Chris Cady are good friends doing all they can to increase the awareness on CMV and to raise money for its cure.
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 YOUNGEST BABY BOY WAS DIAGNOSED AT THE AGE OF 4 MONTHS WITH MICROCEPHALY DUE TO CMV , HE IS NOW 13 YRS =) Brendan B. McGinnis Congenital CMV FOUNDATION IS ABSOLUTELY AWESOME AND SO HELPFUL ! THANK YOU
My daughter was born with congenital CMV. I haven't heard of CMV until a few days after when they found different affects on her that had lead them to believe that it was cCMV. If I had known about this virus I would had been extra cautious and took the necessary precautions needed to prevent this virus to the fullest of my ability. Let's continue to spread awareness and make everybody aware of this awful yet potentially fatal virus!!! Let's stop CMV together and fight for our children!
I know about the Brandan B. McGinnis cCMV foundation because my son Owynn was born with and died from cCMV. My son was 14 months old when he died. While he was alive and even now I work with this wonderful charity.
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.
