The last three months have been very difficult for our family as we come to terms with losing Annabelle. She was a big character and has left a massive hole in our family, the house is very quiet without her.

We have come to peace with her passing, knowing that she was not in any pain and it was sudden. We know that it could have been very different as we are very much aware of what Batten Disease does to a child. Before her death, she was very happy, she had a great 18th birthday party where she danced with her many friends, we had the best Christmas ever, and she was enjoying her return to school, seeing her friends and was planning a summer holiday. She was content.

Annabelle has her resting place, where we can all go and see her, talk to her and find comfort.

We have all had to adjust to a new way of life, but especially for Robbie who relies on routines this has been a very difficult transition. His daily routine used to involve Annabelle, they did a lot together, they played UNO, Hide n seek, they spoke each night over the Alexa and they went to school together once a week. His behaviours are very unpredictable as he is struggling to understand his emotions, we are getting support for managing this. We have created new routines for Robbie, that are unique to him, providing more chances to go out, being more creative by doing some cooking or crafting, encouraging him to be more sociable and to give him more opportunities in general. It will take a while but he is doing ok.

Robbie also remains seizure free, which is absolutely amazing especially with the emotional stress he has been dealing with.

We are making plans to keep Annabelle’s memory alive by doing what she would have wanted, celebrating her birthday. We will be creating the Sassy Walk, an annual event to remember Annabelle and to celebrate her birthday whilst raising awareness of Batten Disease and raising funds for to enable grant support for families. We are Batten Fights Forever.