Digital Journal

Published on 13 November 2020 at 00:00

I have been writing in my journal for a number of years, but since a few months I increasingly feel the need to share my life as Nienke's mom. Nienke has a very rare condition called ROHHAD-NET. There is little to be found about it on the internet and what can be found is only in English. That is the reason why I originally started blogging in Dutch.

To date, around 100 children worldwide are known to have received the diagnosis ROHHAD. Often after many years full of searching. I am convinced that there are more and find it important that more is known about the condition itself. Important to note is that although kids with ROHHAD have alot in common their symptoms can also be so different. This is because of the disregulation that the condition causes. Some functions stop working and other functions will go in overdrive. With every kid it's different. So remember, this is Nienke's story. Her story is unique and so is the story of all the others.

Nienke's operation is finally scheduled in a bit more than a week. She is scheduled to receive a diaphragm pacemaler on May 19,2020. It is  the first time that a child in the Netherlands will recieve this treatment. In the coming period I want to share with you how Nienke and I are doing from my own point of view. When Nienke is old enough, I'm praying she can fill in her part of the story herself.

 

original post: May 10,2020


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