Hello! Our family is from Russia, St. Petersburg!
We have a three-year-old daughter and her name is Lisa! She is the only one child in the family.
When she was one year old, we learned that Lisa has a GRIN1 gene mutation.
Now when she lies on her back she can keep her head in a position, but not for long. She can sit and stand with minimal support, but still can’t walk.
Lisa still cannot use her hands and doesn’t make eye contact, but she will pay attention to a bright light or a burning candle.
Lisa doesn’t speak, but loves when we talk to her and
smiles when she is tickled.
Her seizures stopped two years ago.
Lisa has difficulty falling asleep and staying in a deep sleep for whole night.
So far, she isn’t able to chew, but she has learned to eat when someone feeds her with a spoon!
There are no other children or adults with a GRIN1 gene mutation in Russia and the GRIN community on Facebook is still the only source that helps us in the study of Lisa’s disease.
