Hello and welcome to our first blog. I am mum, Lisa, I am not a writer so you will have to excuse the grammar and go with the flow, I say things like they are.
This blog will hopefully be a chance for all the family members to share their experiences and a way of opening up about what they really feel.
I imagine that some of our entries will be full of laughter and love but I know that some will be filled with tears, sadness and hate.
Hate is a powerful word but we all must have had said it at one point in our daily lives, but hate is used a lot in our household. Annabelle used to say the word a lot, “I hate my life”, “I hate that I cant see”, “I hate…..” and I could write a list as long my arm, but all this changed the day we told her about her diagnosis, now the only time she says hate is when she says “I hate Batten’s”. In fact I think all of us have used the same words, we hate the fact that two members of our family don’t have a future, we hate the fact we all have to watch it happen and we hate the fact we can not do anything about Battens. Our family now have to make hate a positive word, use the power of hate to fight Batten’s and to raise awareness, and to LOVE every moment, turn hate into love for life and to love each other