Avignon’s Story – written by her Mum, Helen

I am in a state of SHOCK as on March 1st I found out my daughter, Avignon has Stargardts Disease. My husband Roy and I are still coming to terms with it, Avignon seems to be coping better than we are at this time.

Avignon is 8 years old, turning 9 this July. For the past few years we were told by her and teachers that she could not read the blackboard at school. We took her off to a few doctors to have her eyes checked, they gave her glasses but she told us they didn’t help. We were even told that it was all in her imanagation.. can you believe that? Now that we found out, only because of the yellow and white flecks that have now appeared behind the eyes that we know she was telling us the truth.

Avignon seems to be a lot happier now as she realises that she will be getting aids to help her. The Specialist we took her to see Dr Glen Gole said her condition should not get any worse and that she has been living with this for quite some time. Wow what a little champion she is. Even through she said for years that letters and numbers would dissappear and appear again on the board, she would still give her school work 100%. I know she will be fine, and my wonderful husband and I will always be here for her and help her on her maybe low days.

Me, on the other hand, went into deep depression, but I’m getting better each day.

Helen Frith
E-mail: h.jean@bigpond.com