Parent Stories

Caroline - Virginia

It is devastating to know that over a third of a century after Caroline was diagnosed in utero and received live-saving and ability-saving treatment, cCMV prevention information is still not presented, babies are still not tested at birth when treatment could stop the progression of cCMV, and parents are still not being advised about antiviral and other treatments in a timely manner or any manner at all.  I am hopeful that pending federal cCMV legislation will pass and cause a huge step forward.

Solomon - Minnesota

Solomon was born with congenital CMV 19 years ago. Today, he is studying Pre-Medicine at Brandeis University in Boston. He hopes to learn more about infectious diseases and continue to participate in CMV advocacy!

Lennox - Iowa

CMV has rocked our world and changed our family, but all of the daily challenges Lennox faces she fights to overcome and has the biggest support system right there with her! She is the happiest little girl and shines so much light onto every doctor, therapist, and person she meets! We love our CMV warrior!

Elise - New York

Elise is my cCMV baby. I had never heard of CMV before...There is no mistake in this plan for you. It may not be the one you had envisioned but it is your story. Choose hope, choose to be positive, and choose to never stop fighting your fight.

Zachary - South Carolina

It has been almost 12 years since his death, I still think about him, talk about him, and share his story. I have had two more healthy children since then. All of my children know about their brother and we continue to celebrate his life.

DJ - Pennsylvania

DJ was born 4 weeks early on December 7th, 2019. He was 4lbs 2 ounces and automatically went to the NICU because of his size. I knew something wasn’t right as soon as I laid eyes on him.

Caleb - Connecticut

He is a miracle. A literal miracle. I can’t even begin to put into words how overwhelmingly blessed I am. Being a special needs mom is something I am proud to be because it means I can connect with other moms who have been through something traumatic and I can try to help them find the silver lining.

Wynne - Pennsylvania

Although she was only here a short time, she was here for a reason. My family and I will continue to advocate on behalf of our sweet baby warrior. 

Paul - Tennessee

I am hopeful that somehow our story can help other families learn more about CMV and hopefully bring awareness to the importance of CMV awareness even before conception. 

Portia - Michigan

​Portia is stubborn, strong-willed and fiercely determined. It’s what gives her an edge in life.