GRI Stories

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.

Ciaran was born on April 23, 2018.  At around 10 weeks old, we noticed that Ciaran wasn’t meeting his milestones.  Countless doctors’ appointments and early intervention visits followed for the next several months with no real answers. 

The diagnosis of GRIN gave us opportunity to reach out and we found our “new family”, a collection of families from all over the world living the same experience. Zach found his genetic Twin and even met him in 2019. We shared experiences, stories, nightmares. We were surprised at the range and degrees of physical and intellectual disabilities across the other Grin kids and Hopeful that one day Zach could do some of these things.

Emmi was born in the Australian summer of 2018.
For the first few months everything seemed to be typical newborn behaviour and being our first child, we were none the wiser. She was the most beautiful baby we had ever seen!