Noah James Coppock, born 11th June 2014, is our 5 year old little superhero. This is the story of a very sweet, yet cheeky, amazing little boy.

From early on, we knew that Noah wasn’t developing at the same rate as other children his age. At 6 months, he wasn’t sitting, crawling or communicating. At 9 months, our paediatrician asked us to commence physiotherapy and referred us to a paediatric neurologist. This took us on the journey of our lives, to find out what was going on with our little boy and to do everything in our power to provide him with every opportunity to develop to the best of his ability.

For almost 4 long years, we searched for answers with no results. Our final chance was through newly developed technology. Finally, through whole exome sequence testing, we were fortunate enough to get a diagnosis of GRIN2A, a super rare genetic condition.

Getting a diagnosis was bittersweet. We finally had a name but GRIN2A is a very rare and complex condition, that effects people in various ways. With very little known about GRIN2A, we were advised that we were in a ‘wait and see’ situation, as no predictions could be made on Noah’s future.

Some luck finally came our way when we joined the GRIN2A support group on Facebook, to then discover that a team of parents from across the world had launched the CureGRIN Foundation just this year. As a united team of parents, we are committed to help raise funds to find a cure for all GRIN disorders, including GRIN2A. Noah, along with other children with GRIN disorders, are part of a research programme being run by the Emory University, who have given us hope that a cure for GRIN is possible.

Noah cannot walk independently, has never crawled and is non-verbal. He attends physiotherapy, occupational therapy, speech therapy and hydrotherapy weekly, as well as attending intensive therapy blocks 2-3 times per year. Through it all, he continues to smile and be happy, make progress in his development, proving his determination towards independence.