Hello.

A few weeks ago my 9yo daughter was winning running and swimming races. Then she had problems with her eyes and was eventually diagnosed with occular myasthenia. Within a week she complained of generalised symptoms and has definitely got the generalised disease.

She has now significant vision issues and although she can move okay at times, experiences strong fatigue at others.

My heart is broken completely. She is on 30mg mestinon six times a day and while i think it helps it doesn't do enough for her to function properly. School starts in a week or two and there is no way she can function at school in this state as she can't even read a book or whiteboard yet. I cant bear to think of her not going to school. We have only had one consultation since diagnosis due to the holiday period.

The reason for my post is that I'm looking for some positive stories at any cost. I understand she won't be the athlete she was but I'm hoping against hope she can get her vision and at least be a relatively normal kid at school.

She is so much braver than me but we have not told her there is no cure.

I know it's not good to live in denial but I'd give my right and left arm to be offered some hope by people who have been through this awful disease.

Yours.
Joel.