Why is my daughter asleep at 11am in the morning when she should be at school?

Its not fair, she is 11years old and should be full of energy and full of life but Batten Disease is taking it away from her. Annabelle slept for almost three hours, during that time I checked on her every five minutes, I was full of worry, I even cried at times.

Annabelle does not sleep that well at all, she can have days of which she only has a couple of hours sleep a night and times where she wont sleep at all. Annabelles behaviour reflects this, she has violent outbursts, anxiety attacks and struggles to concentrate.

Today was a day when her body said “enough is enough” and it wanted to sleep.

This is a symptom of Batten Disease, a disease that we are fighting together and we will carry on fighting.