Ninte was born with BPES

Hello,

4 years ago (2017) our daughter Ninte was born with closed eyes. After a lot of tests we heared the diagnose of BPES.

There are 2 types of BPES but Ninte didn't matched any of those two types. It is a type of BPES that still is not know in the medical world.
So we didn't get answers on our questions. It's like blindstaring into the future. We don't know anything.
The doctors told us that they didn't find any persons with this type of BPES in their archives.

For this reason, we hope that there are other peoples who has the same diagnose or know someone with this diagnose.

Please contact us if you read similarities or if you have further questions about the story of Ninte.
We hope to get to know people who recognise theirselves in this story. We hope we get to know people who can tell us more about medical surgerys, typical characteristics or other things about this.

Cordial greetings,