GRI Stories

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!

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.

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.

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.

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.

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.

Our journey and how it began. May 11, 2018, at 5:00 am started as the most exciting day of my family’s life.

Aiden was born perfect and healthy at 40 weeks on 24 September, 2018.