The story of Nicoleta
Krystof is 5 years old, and 3 years ago he’s been diagnosed with VARS syndrome! The geneticists said it’s a new and rare disease, and they had no name for it but they called it VARS due to the gene with the same name that is causing this condition! Krystof is the only case in US with VARS syndrome and according to Krystof’s geneticists team there are only 3 more kids in the entire world with VARS syndrome, first case diagnosed was in 2015, the same year that my son was born! Krystof was a normal baby until his pediatrician told me something is not normal with his head circumference, so our nightmare started when he was 8 months old! Since than we started PT, OT, speech therapy and aquatic therapy! He is developmentally delayed, he started to walk when he was 2.8 years old , he is non verbal, but he seems to understand what’s going on around him, I can see him frustrated many times, he pulls hair when he wants attention or frustrated, but despite everything he is a loving child, he gives tight hugs and lots of kisses, he loves to be around kids!
We would like to get in touch with the other three families that are dealing with VARS syndrome, so we can learn together more about this disease, to share our experiences, and eventually to find a cure for this disease with the help of scientists! We don’t know what the future looks like living with a rare disease and this is so scary!