Friday the 9th June 2017, Batten disease awareness day.

I turned on my phone that morning to see that 132 of my facebook friends had added the awareness frame to their profile picture, it was fantastic to see the support.

The BFF disco which was organised by two very special friends, Rachel and Amanda, and with support from the lovely Sara who let us use the Girl Guiding Hall in Ringwood and with the dj’ing skills of Chris and Simon we had a successful night. The children loved it, we had a superheroes theme for the younger ones and decorated the hall with capes made by Robbie and his friends at pre school and the older children chilled to the music either inside the hall or outside.

Annabelle did a small speech thanking every body then we both danced to Annabelles favourite song, I love my life. I cried whilst dancing with her because we have had years of her saying she hates her life and now she loves it.

We raised £835 at the disco!!!!! Amazing.

We would like to thank everybody who has given us support, it means a great deal to us. We feel your love and we are receiving your prayers.