Batten Disease Awareness Day 2017 – BFF Disco

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.



Education day at Linden Lodge

I accepted an invitation and attended the Erasmus+ project Education information day hosted by the BDFA and held at Linden Lodge School.

The day was very informative, I learnt alot and I was very pleased to have Annabelles new SENCO attend from her new school of which she starts in September.

One question the project asked was when is it the right time to make the transition from Text to braille when a child has the start of dementia?. In most cases of Batten Disease the diagnosis comes well after the child has started to loose their sight and in some cases dementia has already started so learning braille would be difficult. It was made very clear that braille needs to be learnt early, with this information we are hoping for Robbie to learn Braille alongside him learning his letters when he start school in September. Annabelle started to learn braille last January and is now a natural at it.

There was also a talk on communication, and that it is a very good idea to have Speech and language therapy from the moment of diagnosis. Every child has the right to communicate, once a child has lost their speech they still can understand everything and they still need ways to communicate. Different parts of the brain work for different things, the child may struggle to find words but they can sign them. So teaching the children a sign language, tactile signing will help their communication skills.

The afternoon finished with a Professor Adam Ockleford talking about his music therapy project. Like I mentioned before, different parts of the brain work at different times and communicating via music proves this theory. Children are taught rhythms for speech and they are taught to sing sentences instead of saying them. Music plays a vital key role in anybody’s life, we can all relate to that moment when a certain song comes on the radio for example. Music can trigger memories which helps deal with dementia. Music can be used to influence the mood of a child, such as calming music to allow the child to fall asleep etc.

I also got to meet other parents, of which feels so good. The relief to talk to someone that knows exactly how you feel and share experiences with is just a therapy in itself.

A massive thank you to Harriet Lunnemann and Barbara Cole from the BDFA, Angie Thompson from Linden Lodge and Bengt Elmerskog & Anne-Grethe Tossebro from the Erasmus+ project for a succcessful informative day.

2 – Bracknell Half Marathon Run


On Sunday the 7th May, myself and the girls travelled to bracknell to cheer on the Afton team that took part in the half marathon. The weather at the start of the race was drizzley followed by an overcast morning with a chilly breeze, the perfect weather for running. The sun came out after majority of the participants had crossed the finish line.
The names of the team members were Lee Carter, Jo Davies, Sarah Carter, Nabil Akhtar, Joe Corless and Adam Banks, they are all colleagues of Andy from work.
The team did ever so well, most of them beating their personal best, Lee did it in 1hour 35, an amazing achievement. Their families came to cheer them on and you could see how proud they were of their runners, it was written all over their faces.
The team raised an amazing total of £2181.50 for Batten Fighters Forever and we are very grateful for their support. 3382155D-4276-4CE4-BA61-6D9B62357F20-377-0000002F064A0093_tmp

1- A hate to love situation

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

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