A MESSAGE FROM Vanessa's NYC Marathon Fundraising Page
In June 2017, my life changed forever. At 25 weeks pregnant, I was told that something was incredibly wrong with my baby and that my pregnancy would likely end in miscarriage or stillbirth. That was the first time I ever heard those three devastating, transformative letters- CMV. He was born via emergency C-section two weeks later, weighing just 1 lb, 2oz. Though Logan had been given a 10-25% chance of survival due to the virus and prematurity, he was a fighter. Over the next four months, Logan overcame many obstacles, including moving from an isolette to a crib, lowering his oxygen support, and learning to breastfeed. After over 100 days and countless hours spent at the NICU, we were finally getting ready to take him home. Unfortunately, Logan became resistant to his antiviral medication and the virus quickly infected his lungs and brain. An MRI revealed severe and irreversible brain damage. Logan had been reintubated, sedated, had a feeding tube placed, and was looking at a very poor quality of life. We no longer felt it was fair to make Logan continue his fight, and decided to change his care to comfort measures only. On October 25, he died in my husband’s arms, with me by his side. He was just 4 months old. Not a day goes by that we don’t think of and miss Logan.
Every time I share my story, people simply cannot believe that they have never heard about a virus so common, especially women of child-bearing age. After losing Logan I learned a lot about cCMV, including that I was at an increased risk because I had a young child in the home. It was hard to learn that there are simple steps I could have taken to prevent an infection such as kissing my son on the forehead instead of on the lips, and not sharing food or utensils with him, things all moms do. Women are educated about the prevention of much less common conditions such as Zika and Toxoplasmosis (the "kitty litter disease"). Women deserve to know that cCMV exists and to be educated on how to protect themselves and their babies from it.
Since losing Logan, I have worked tirelessly to raise awareness. In 2021, I collaborated with members of the Massachusetts CMV Coalition and Charles Group Consulting to write a bill that would require prenatal education and universal newborn screening for cCMV in Massachusetts. Our bill was filed by Senator Joan Lovely and Representative Kay Khan and it was moved favorably by the Joint Committee on Public Health, but it did not make it through the process by the end of the legislative session. With the start of the new session in 2023, our bill has been refiled by Senator Lovely and Representative Khan and this time we plan to make it to the finish line.
I am honored to run this race in Logan's honor and memory, just days after the 6th anniversary of his passing. Your donation will go directly to the National CMV Foundation, a non-profit
organization dedicated to promoting awareness, providing access to resources,
and sharing prevention information to eliminate congenital cytomegalovirus (cCMV).
A Message from the National CMV Foundation:
"CMV is
the most common congenital viral infection in the United States, affecting
30,000+ newborns per year, yet, only 9% of people know about it. If given
proper education from the medical community before or during pregnancy, women
can be empowered to make informed decisions about their heath and their baby’s
future. Your gift is extremely important to us and will offer immediate
resources that are directed to awareness campaigns and pediatric research
opportunities. These resources will impact the public health services urgently
needed in our communities."
