I am a proud but a bit-tired father of Arian, an 8-year-old boy diagnosed with de novo mutation on the GRIN2B gene. Our family, who also consist of my wife and Arian’s loving mother Amela, who is also a board member of GRIN Europe, and Arian’s little brother Kian, live in Denmark.
Arian was born in December of 2014 and already few months later we were certain that something was wrong with his development. It took almost a year to get the diagnosis, and back then there was not much knowledge about the GRIN genes in the scientific papers or medical literature. But fortunately, this was also the time when we, as few other parents did, took to the social media to search for others in similar situation.
Pretty soon parent groups were formed, and not long after that first cross border organisations emerged, bringing the parents, researchers, and doctors closer together, enabling them to work on treatments, cures, education material and maybe most importantly, helping the parents with newly diagnosed kids to find their way around the GRIN world and help their kids and families in the best possible way.
I have been the part of the parent group that started GRIN2B Europe, now known as GRIN Europe, and have been active member ever since.