Strides 4 CMV - Twin Cities

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.

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.

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!