Emmi
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!
Elio
Our sunshine Elio was born in February 2009. He appeared to be healthy and looked like a little “Monchichi.” But after a few months we noticed that something was wrong with his development.
RAREfest 2020
Taking place on November 28th, this FREE event for the experts and the curious of all ages promises a feast of excellent speakers, exhibitors, films, expert talks and patient voices. A great opportunity to mix and mingle with the rare disease community through live Q&A and chat rooms.
Jersey
At 18, I never thought in a million years to be pregnant by my 16-year-old boyfriend. But there we were. October 3, 2001, a baby girl, who we named Jersey, was placed in our arms after an emergency c-section and our worlds were changed forever.
Dreson
Today, Dreson hasn’t said MAMA or DADA nor has he started to crawl or take those first steps, but he has filled our home daily with laughter and wet kisses. Looking into the future we’re not sure where life may take us, but what we do know is we’re going to provide Dreson with best life possible.
2020 GRIN Virtual Conference
The annual GRIN Conference went virtual this year! Access the sessions below to learn more about what’s happening in GRIN research and hear the latest developments from clinicians, researchers, and family members.
David
When David was five and a half months old, he was diagnosed with Cryptogenic West Syndrome (without apparent cause). I never accepted that there was no cause for this diagnosis.
Danica
Our family knew something wasn’t right when she could not lift up her head. Danica started therapy when she was about 9 months old. That’s also when we got the diagnosis of GRIN1.
