Updated: March 20, 2021 10:00 PM
Created: March 20, 2021 04:12 PM
On Saturday, families from around Minnesota came together at the University of Minnesota to place 400 pinwheels into a garden. The pinwheels represent the children and families affected by congenital cytomegalovirus (CMV).
"Cytomegalovirus is a virus, it's a fairly common virus," said Leah Henrikson, whose daughter Vivian was diagnosed with CMV a few days after being born.
Vivian was born with cerebral palsy and hearing loss from CMV.
"She's doing great now, but she works hard. She works really hard in therapy, and we work hard as a family to make sure she has all the resources that she needs," said Henrikson.
That was the inspiration behind "The Vivian Act."
It's a bill proposed in Minnesota that would make the education of CMV mandatory to healthcare providers and women of child-bearing age, and also include a universal screening of all newborns. If passed into law, Minnesota would become the first state to implement the screening.
"It's critically important to get that diagnosis early, start early intervention to complete the package, to have the prevention and also the diagnosis," said Stephanie Steidl, whose son was also diagnosed with CMV.
"I am really passionate about advocacy for CMV because I just don't want any other family to experience what we did, that surprise and shock. I don't have a chance to go back and change what happened and prevent CMV, but I do have an opportunity to impact what happens for future families in Minnesota," said Henrikson.
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