April 2018

Lurie Children's Hospital: Improving Awareness and the Timely Diagnosis of cCMV in Illinois

Our goal is to be able to provide a rapid diagnosis for those newborns who fail their hearing screens in the newborn nursery, when the hearing loss is attributable to infection with CMV during pregnancy.  Recent research has revealed treatment options for those newborns found to have hearing loss from congenital CMV, to optimize hearing outcomes and neurodevelopment. 

Dancing With Shards of Glass

Author: Andrea Stambaugh A few weeks ago we went to The Kids Equipment Network to pick up an adaptive stroller/wheelchair for Axel. 

I have been fighting to get Axel a wheelchair for months. I had prepared myself in my mind. I was so excited for getting out of the house to be simpler. We talked about it the entire drive. Once we got there, they wanted us to put Axel into the wheelchair so they could fit it appropriately. I set him in the perfectly supportive bright green chair and I strapped him in. He looked up at me with a big smile, the way he always does. I smiled back. But, then it hit me. Like a ton of bricks. I just strapped my child into a wheelchair, for the first time. And I lost it.

The Baby After the CMV Baby

Author: Megan Nix My husband and I always knew we wanted a third child, even after our second daughter, Anna, was born with congenital CMV. Even though Anna’s needs (deafness and motor delays) require more time spent in therapies and doctors’ offices than we ever expected, Luke and I both came from bigger families, we wanted to gift our daughters with another sibling, and, I have to admit, I wanted another chance at a typical experience of pregnancy and motherhood.

Thank You Wristband Buddy

As part of our fundraising and community outreach efforts, we are pleased to mention that WristbandBuddy has offered us 200 free silver bands to spread awareness about our cause. Thank you WristbandBuddy for your contribution and support.