I am a GRIN mommy. Of course, the main reason that I am a GRIN mommy is that I am the mommy of our beautiful Charlotte who was diagnosed with GRIN2B in 2015. However, being a GRIN mommy involves so much more! 

GRIN Disorder is rare. For many parents, a GRIN diagnosis (whether GRIN1, GRIN2A, GRIN2B, GRIN2C, GRIN2D, GRIN3A or GRIN3B) results in many questions and very few answers. Also, in many cases the GRIN diagnosis is the start of a long and often lonely search for help and treatment for your child. Not to mention that it is definitely the start of a lot of grief and a constant state of insecurity and worrying sick about your child’s future. There are unfortunately not many people who can understand how much care and attention a child with a GRIN Disorder needs every single day and what toll that takes on the parents and on siblings. The only people who truly understand are other GRIN parents who, on a daily basis, face the exact same challenges and struggles you do. And for this it does not matter whether their child has the same GRIN Disorder as your child, or whether their child is the same age as your child. It doesn’t even matter whether their child faces the same GRIN symptoms as your child. What matters is that as parents you share the same worries and the same pain and that creates a bond instantly! 

The international GRIN community is very close knit. Nino and I have GRIN friends all over the world. We stay in touch through the various Grin Facebook groups, through personal messages and of course we meet at the conferences. We all share our knowledge of GRIN and the personal experience we have with our children. Most important though, as GRIN parents we support each other through thick and thin and have each other’s backs no matter what. I cannot remember how many times I have tried to console a fellow GRIN mommy and tried to talk her through those dark and difficult moments we all face every now and then. Or how many times I have joined in an online brain storm session to determine why a child behaves in a certain way and how to best help that child. I absolutely love to watch pictures and videos of all our children’s milestones. I tear up and feel that fierce joy and pride at our brave children’s determined perseverance finally paying off. In return, I get a lot of love and support from other GRIN mommies and without them I would not even have half the knowledge of GRIN that I have today.

Despite the above, I sometimes feel a little bit out of place in the GRIN community. At times I even feel guilty about my own grief and worries about my Charlotte and I hesitate to share the hard times I have coming to terms with her GRIN2B. In comparison to many other GRIN children, our Charlotte is very lucky indeed. She has virtually no physical problems and she has neither autism nor epilepsy. We can take Charlotte just about anywhere without having to fear that she gets upset or over stimulated and without having to bring along a truck load of equipment, diapers, medication and special nutrition.

When I compare Charlotte to other GRIN children who are often non-verbal, wheelchair dependent, have epilepsy and spend more time inside the hospital than at home, I feel I have absolutely no right complaining at all. However, Charlotte’s blessing is also her curse. Without physical impairments, she can easily venture out into the world on her own. She is a beautiful and cheerful young lady and at a first glance people do not notice she has an intellectual disability. As a result, people often overestimate her and react unkindly when she is unable to live up to their expectations. Although she is 12, Charlotte functions at the level of a four-year-old only. She is totally innocent and naive, is unaware of any danger and would gladly go along with any stranger. She has difficulties regulating her emotions and has a hard time determining how she should behave appropriately in public. As a consequence, she is totally unable to fend for herself in our world and she is an all too easy target for people with bad intentions at heart. For Nino and me that is a constant cause of worry and grief. In addition, the constant caring for and watching over a child that is essentially a toddler, takes a very heavy toll on us and our family as well. Especially when we realize that in principle she will not develop further and that she will remain a four-year old for the rest of her life. In those moments it is very hard for me to stay strong and positive and to look at Charlotte’s future with faith. It really helps then when my fellow GRIN mommy’s give me a big virtual hug and assure me that my grief may be different than theirs, but that it is just as real and that it is okay to feel that way for me too. 

In addition to being a dedicated mother for my Charlotte and advocating for her as best I can, for me a very important aspect of being a GRIN mommy is to help other GRIN children and their parents as well. For us Charlotte’s GRIN2B has been a five year long, hard and lonely search for answers. Though we have finally managed to find those answers for our Charlotte, I want to help make that search a lot easier and shorter for other GRIN parents. Nino an I are consequently involved in GRIN2B Europe (the European GRIN foundation), and we are in the process of setting up a Dutch Grin Foundation as well.

With this Dutch GRIN Foundation we aim to provide knowledge and support to (newly diagnosed) GRIN families. Also we want to enable parents to meet and share their experiences. After a two-year fight, Nino and I have been able to bring the Spanish L-serine trial to the Netherlands as well. In the St Radboud UMC Hospital in Nijmegen, Professor Dr. Clara van Karnebeek now treats our Charlotte and other Dutch Grin children with loss of function with L-serine. So far the results are very promising! We hope to continue our close cooperation with Professor Dr. Van Karnebeek for our foundation as well as we could definitely use a medical advisor who has year-long experience with GRIN Disorder, is open to new treatment options, and keeps in close contact with the international GRIN research community.

What a difference this is to the situation just five years ago when our geneticist sent us home after Charlotte’s GRIN2B diagnosis with just two copies of the internet on GRIN2B and a head spinning with questions. It makes me very hopeful that GRIN Disorder will be treatable and perhaps even cureable in the foreseeable future. Also it makes me extremely proud of all us GRIN mommies and GRIN daddies who have fought tirelessly for our kids to make this all happen!