GRI Stories

For many parents, a GRIN diagnosis results in many questions and very few answers.

This is not the life we expected for Coco or our family, however our love for her is infinite and the joy and happiness she brings to our family is immeasurable. Our lives have become much more intentional now and focused on Coco living her very best life.

Lacey still can’t talk yet, but me and mom can tell what she wants 9 out of 10 times with her actions or approximations. It still can be frustrating, because most of the time she doesn’t even know what she wants. But when she repeats I love you as “wub you.” it melts my heart.

Andrew’s nurse noticed an “unresponsive episode” in which he momentarily stopped breathing. We would later go on to realize that the episode in question was probably the first of many seizures he would experience.

At 6 months old, the same day she received the meningococco B vaccine , she had her first convulsive seizure.

Logan has always had such a sweet disposition.  I used to wish that if Logan could have anything in life it would be to be happy and to not be in pain, that wish has come true for the most part.

Hello! Our family is from Russia, St. Petersburg! We have a three-year-old daughter and her name is Lisa!

Immediately after giving birth, he had to be resuscitated and then transferred to another, better-equipped, hospital. Dominik was really a small baby (2370g), but very strong from the beginning so everything turned out well, if only for a moment

Emerson is a fun, busy little 2 and half year old boy with a ferocious appetite. Emerson was born healthy on his due date and had no noticeable issues until his 4-month checkup.

Bentley is a sweet girl who was diagnosed with GRIN1 at just 2 weeks old.

GRIN1 does not define Bentley. She is a baby sister, a granddaughter, the best at sleeping at night and can be the sweetest girl, as long as you are holding her. Bentley has come very far in her therapies, but it has been a very long process for her.