The Famigletti Family (Casey, Regan, Gracie, and Doug)
I met Casey at the preschool where my youngest daughter Peyton attends. Her two year old little girl, Regan is in Peyton's class. Along with Regan, she totes along little Gracie in her infant carrier. Gracie is beautiful - with bright blue eyes and the best demeanor you can ask for in a little baby. So it was weeks when I even noticed that she had on hearing aids and to find out that what I thought was a two month old baby is actually almost 8 months old. Casey told me a little bit about Gracie - born premature at 30 weeks, she spent 2 1/2 months at NICU and is profoundly deaf in both ears. Then just last week, she invited me to join a meeting that she was having at her house to raise awareness on Gracie's condition. It was only this time when I realized what really caused Gracie's condition and how serious it is. And worse of all, how little information soon to be or pregnant women are given on this virus.
It is called Cytomegalovirus (si-to-MEG-a-lo-vi-rus) or CMV. It is a common virus that infects people of all ages. Once CMV is in a person's body, it stays there for life. Most infections with CMV are "silent", meaning most people who are infected with CMV have no signs or symptoms. CMV can be transmitted to the unborn child of a mother with a primary CMV infection. When a baby catches CMV prior to birth, this is called Congenital CMV.
Every year, 1 in 150 children is born with congenital CMV.
Congenital CMV causes deafness, blindness, cerebral palsy, mental and physical disabilities, seizures, and death. It is more common than Down Syndrome, Spina Bifida, and Fetal Alcohol Syndrome and yet so many people remain unaware of it and it's effects. Transmission of the virus can be prevented by educating yourself on the risk factors, symptoms, and ways to prevent transmission. This is Casey's goal - to reach out to as many people as possible starting in our area to raise awareness and to educate women who are pregnant or planning on becoming pregnant.
For more information, please visit Stop CMV. To read Casey's story, click here. Reach out to help by spreading the word on CMV.
I can't believe this exists and I never knew about it! I've had 3 kids and you would think somewhere along the line doctors would mention it. I'm so glad you are helping your friend to bring awareness to this disease so other babies can be saved.
ReplyDeleteI too had a child, Elizabeth, born disabled by congenital CMV. That is great that you are trying to help your friend raise awareness as that is what I do now that I have time--now that Elizabeth passed away during a seizure. I interviewed the country's leading congenital CMV experts and found that most OB/GYNs simply don't realize how common it is. Pregnant moms need to avoid kissing their own toddlers around the mouth or sharing utencils with them because young children are the majority of the carriers of CMV (most people have had it by the time they are 40, but you don't want to get it when you are pregnant).
ReplyDeleteSincerely,
Lisa Saunders
Author of "Anything But a Dog! The perfect pet for a girl with congenital CMV" www.authorlisasaunders.com
Thank you Lisa for sharing your story on Elizabeth. She was a very lucky little girl having you as her mother. I hope that by spreading the word, even if we only get to help one mom - that makes all the difference in the world.
ReplyDelete