My name is Gilianne Nelissen. I live in the Netherlands together with my husband Nino and our 3 fantastic children: our daughters Charlotte (2008) and Caitlyn (2009) and our benjamin Liam (2013).
Charlotte (to the right) has GRIN2B. Although we knew from just before her third birthday that Charlotte had a significant developmental delay, it took until August 2015 before we were diagnosed with GRIN2B disorder.
For us, this GRIN2B diagnosis was the start of a year-long search for answers that literally took us all over the world. Fortunately, in the end we found our answers and things are going really well for Charlotte now. She attends a good school, gets the right therapies and since she started using L-serine her cognition has improved a lot. However, she will always have a mental disability and she will never be able to live her life without constant care and support.
Of course for us parents this is a cause for constant grief and worry. In my struggles to come to terms with my daughter’s diagnosis, I have taken to advocating for GRIN disorders and providing support to (newly diagnosed) GRIN parents as a way of making a positive sense of her diagnosis.
Consequently Nino and I are among the founders of GRIN Europe and we also have a Dutch support organization for GRIN parents called GRIN In Nederland (and België ❤️) which supports families in navigating the complex world of their child’s GRIN diagnosis.