Help Valarie raise money

CMV.  Most people do not know what this stands for and have never heard of cytomegalovirus, or CMV. For my family, we learned of this virus when Levi was 3.5yo and we were on our last straw to figure out why our sweet little boy started to lose his hearing before his 3rd birthday. 

Levi had failed his newborn hearing screening in the hospital when he was born and was referred to an audiologist which he saw at 6 weeks old. After additional testing, it was determined he had normal hearing in both ears and his failed screening in the hospital was a false alarm. 

Fast forward a few years. A couple months shy of his 3rd birthday when he failed another hearing  screening at daycare. Another referral to an audiologist. Except this time it didn't show normal hearing in both ears. Another referral, confirmed by another Audiologist, that Levi did in fact have a progressive hearing loss. Confirmed again a few months later with sedated hearing testing (ABR or Auditory Brainstorm Response testing) in the PICU. This led him to getting bilateral hearing aids right away (and most recently this spring, a cochlear implant on his left side). 

Yet nobody could explain why this sweet child of ours, all of a sudden is losing his hearing. After another 8 months without answers, including several rounds of genetic testing and sedated brain MRI, still no answer. Finally a provider told us there is one last thing we can test for, but he did caution us that he didn't know much about it. CMV.

We were able to test Levi's newborn blood spot sample and it was confirmed he was born with congenital CMV. Meaning, I had contracted CMV while pregnant, was unaware as I was asymptomatic, and Levi was also asymptomatic at birth. CMV is the leading cause of non-genetic hearing loss in children and every 1 in 200 babies is born with CMV.  8-12% of babies born with asymptomatic CMV will develop progressive hearing loss, as did Levi. It took us 3.5 years to be informed of this information from a blood spot sample we had taken within the first 24 hours he was born. If we could have had these answers and information immediately after he was born, we could have been routinely checking his hearing to catch his hearing loss much sooner and gotten him the support he needed much sooner.

Thankfully, in Feb 2023, MN became the first state in our country to now require testing for CMV of every baby at birth. Unfortunately for us, this was almost 2 years after Levi was born. Since then, only 1 other state (Connecticut) has joined MN in testing for CMV at birth. That means that 48 states are still missing diagnoses at birth and therefore neglecting treatment options sooner. We can do better. There is still not enough education and resources, not only for families, pregnant mothers, but also providers to help educate and support these families so that other families don't have to wait 3.5 years, or longer, for answers.  

In light of all of this, I always want to encourage my children to be brave and show them that we can do hard things. I'm stepping out of my comfort zone to share our story, in hopes to raise awareness of CMV. I never thought I'd find myself running another marathon, but when the opportunity arose to join the CMV Foundation team this fall at the Medtronic Twin Cities Marathon to raise money and awareness to continue to support these families and education nationwide, I knew I had to sign up. 

My goal is to raise $1500 for the CMV Foundation in honor of Levi. CMV does not define us, but it is a part of our story. Despite his hearing loss, I've never met another little boy that truly feels the beat of the music so deeply in his soul. I hope he can continue to hear the music he enjoys so much, for all of his life.

Please help me in raising money and awareness of CMV, sharing our story, or sending good vibes my way on race day. I know I have the best motivation that will be waiting for me at the finish line that day.