It is shocking and infuriating that we had never heard of CMV until standing in the NICU on Aug 2, 2019, hours before our son Brycen John passed away. We have also since received incorrect information on CMV from many sources. Thankfully, the National CMV Foundation has provided us constant support and knowledge.
We truly cannot imagine where we'd be without this organization. We are therefore incredibly passionate in raising #cmvirus awareness and in raising donations for the NCMVF. CMV is the #1 infectious cause of birth defects and developmental disabilities in the US. Each year, 30-40,000 children are born with CMV resulting in 400 deaths and 6-8,000 children with permanent disabilties, in the US alone! More children will have disabilties due to CMV than other well-known infections and syndromes including Down Syndrome, Fetal Alcohol Syndrome, Spina Bifida and Zika. Further, infants are only tested if there is a reason to suspect CMV and a baby must be tested within 21 days of birth to confirm CMV is congenital so there are likely many children that go undiagnosed.
We ask that you consider making a donation to NCMVF in memory of our beautiful baby boy Brycey, our B-Boy, whom we miss every single moment. Donations to the National CMV Foundation will aid in assisting with their mission to educate women of childbearing age about congenital CMV by:
1. Empowering community networks to facilitate conversation and champion the cause
2. Influencing CMV research priorities regarding CMV prevention, treatment and intervention
3. Working to include CMV on the Uniform Newborn Screening, requiring a CMV test if an infant fails the newborn hearing screening, passing legislation to require medical professionals to educate pregnant women on CMV
4. Advocating for a CMV vaccine For more information please see our attached pictures or visit www.nationalcmv.org.
We are also extremely excited and humbled that Emilie has been asked to co-chair the Associate Board at the NCMVF. This will provide us with even more access to information and contact with critical networks. We are thrillled with the opportunity and look forward to sharing insights with you all.