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This will be a 5k Run, Walk, or Roll to raise awareness for CMV. The event will start at 9 am. Please continue to check this website for updates.
***EARLY REGISTRATIONS ENDS 7/29/21***
Congenital CMV (cCMV) is the leading, non-genetic cause of childhood hearing loss, and a leading cause of childhood disabilities. Less than 9% of women have heard of cCMV. Proceeds from Strides 4 CMV benefit The National CMV Foundation (NCMVF), which is dedicated to promoting awareness, providing access to resources, and sharing prevention information to eliminate congenital CMV. The mission of NCMVF is to prevent pregnancy loss, childhood death, and disability due to congenital CMV.
We started our journey with cCMV when our daughter Vivian was diagnosed at 2 days old. Like many other families, we had never heard of cCMV and we were really intimidated by the unknown road ahead. Vivian’s cCMV caused unilateral hearing loss, microcephaly, and cerebral palsy but luckily she was treated with antivirals right away to prevent further damage to her hearing. She has had many doctor appointments, therapy, and surgeries but despite all this, Vivian’s story is one of courage, strength, and hope. She is 5 years old and with her big beautiful smile and vivacious personality she is our daily inspiration and reminder of what hard work, determination, and a positive attitude will get you. She loves school, singing, dancing, riding her scooter, and running with her friends and her brother. This spirit has been contagious for our family, and one we are passionate about sharing with others. We currently have a sponsored bill in front of the Minnesota legislature called the Vivian Act. Once the bill is passed, it will bring much-needed CMV awareness to families and medical providers across the state.
Hayes was born July 2019 and I had a completely healthy pregnancy with him. While in the hospital, about a day or two after his birth, a student from the U of MN stopped in and asked us if we wanted to participate in their study. It would be a quick swab of Hayes’ cheek and they would be on their way. This was about the 100th person that came in our room that day and I was so tired, I just said yes and assumed my son was 100% perfect.
About 2 weeks later, we received a call from our pediatrician. Hayes tested positive for congenital Cytomegalovirus (cCMV). We had no clue what it was. We had never heard of it. My doctor never mentioned it or tested me for it and if I hadn’t said yes out of frustration to Hayes being tested for it in the hospital, I would not have known he had it. Immediately we began questioning what it was and what this meant and soon we were connected with Dr. Schleiss (he is so amazing!) at the U of MN and had a long talk with him on the phone. The most common side effect of cCMV is hearing loss (but there are many, many known severe side effects). Since Hayes had passed his newborn hearing test, Dr. Schleiss just said we would need to bring him in for hearing tests every 3 months until he is 3 years old to ensure there has been no continued loss as this can be common with cCMV.
We are so blessed so far for Hayes' health and are hopeful he continues to do well and we want to do anything we can to help educate on this topic to prevent CMV.
Hudson was born with Congenital CMV but was not diagnosed until he was 8 months old. He has an intellectual disability, cerebral palsy, seizure disorder, feeding delay, and is non-verbal. Hudson is the smiliest kid I have ever met! He finds so much joy in the people in his life. He LOVES music, dancing, playing with his siblings, anything Winnie-the-Pooh, and reading books. His superpower is the ability to make everyone smile!
Pippa was diagnosed with Congenital CMV at 20 weeks gestation. She received treatment in utero and after birth. She has an intellectual disability, developmental delay, seizure disorder, feeding delay, hearing loss, and is non-verbal. Pippa is an extremely happy, sweet girl. She enjoys her dance class, going on walks, and watching Daniel Tiger.
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