Share your CMV story with National CMV
Perhaps no one is able to give greater insight into living with congenital CMV than the parents of children and adults born with CMV.
According to the CDC, each year 1 in 150 children is born with CMV and 1 in 750 will experience disability because of CMV. These high statistics reinforce CMV as a public health concern, but we need to show the world our thousands of children.
We say we want politicians to pay attention to us and care more about congenital CMV. We need them to hear about our children and our struggles as their constituents.
We say we want celebrities to champion our cause, to discuss CMV on telelvision programs, to make CMV a more prominent public concern. We need to convince them that ours is a cause compelling enough and crucial enough for their time, energy, and image.
We need to be the visual, vocal, visceral standard bearers of congenital CMV.
EVERY story is important.
* If your child didn't get to come home from the hospital in your arms, your story is important.
* If your child has very few (if any) lasting effects from congenital CMV, your story is important.
* If you live in a country outside of the United States, your story is important.
* If your child is still young and you don't know what to expect in the future, your story is important.
* If your child has left this life too soon, your story is important.
It is hard to revisit many times and relive those moments that define our past, but our stories and experiences can encourage and strengthen other parents as well as offer the public invaluable insight into life with CMV. These compelling stories can be the key to positive change - policymakers, the press, and other key influencers will learn more about congenital CMV and its profound impact, largely unseen around the United States and the world, until now.
Please spend a few moments in careful thought, reflection, and composition to help us define our future by including
details about your and/or your child's experience with congenital CMV. You're encouraged to include information about your pregnancy, delivery, diagnosis, prognosis, and how you and your child are doing. Feel free to write about your thoughts and feelings as you have raised your child born with congenital CMV.
Please send your story and 1-3 photos of your family and your child to stories@nationalcmv.org.
Posted: 4/20/2016
Category: Community, "Parent Perspective"