The First Wheel chair

6 weeks ago, whilst we were away in our motor home, Annabelle had a conversation with me.

The day before we had walked along Hastings seafront, it was a windy day but dry. We parked the motor home at one end and off we went, enjoying the delight the seaside has to offer. We looked into shops and looked at the buildings, strolling along enjoying ourselves.

We walked back to the motor home for lunch. While I was preparing lunch the children were playing on the Green, but Annabelle was in the motor home slumped against the window, head on arms, feeling absolutely tired.

Annabelle said “Mummy, yesterday if I had walked one way and you pushed me back, I could have been playing with the others today. I’m fed up with my body aching all the time, fed up with feeling tired and I’m very fed up with not being able to join in the fun”. I was stunned! My Annabelle admitting defeat. She asked for a wheelchair – a very mature decision to make.

This is something that I thought would not happen for a long time, but today we went to be assessed to see if we are allowed a wheelchair or not. To my surprise we came away with one.

Annabelle tested four wheelchairs and she chose the one she wanted. It was her chair after all. She had to feel comfortable and she had to accept it. She chose an Action Junior, in red with flashing front castors and with hand brakes.

Annabelle loves it, and can’t wait until winter so people can see the flashing wheels in the dark.



Silverstone June 2017

Please excuse my vagueness in this blog with regard to motorsport, Andy and the boys are the real fans, myself and the girls just enjoy it.

Robbie spends most of his time racing toy cars around the carpet and running around the garden making car noises, just like his big brother Aiden did at 4years old. The boys love fast cars so you can imagine their delight when we received an invite from Martin Plowman of UltraTek racing to come to the Silverstone 500 meeting.

Martin had heard our story through a lovely lady called Emma, who’s niece goes to the same school as our children. Emma told me that Martin wanted to help raise awareness and he did a video on his facebook page on Batten Disease Awareness day, the 9th june.

The invitation was for us to visit the teams garage, meet Martin and the other drivers, to see the car and then to enjoy the race from the garage. Wow, of course we accepted, the boys jumped with joy and Annabelle was very pleased that she could actually experience a race.

We arrived at Silverstone on Sunday, first port of call was to admire the super cars, they were all lined up looking perfect with their paintwork glistening in the sun. Robbie was amazed, got a little to excited  and was then told off for touching a Lamborghini, oops.

Ben from UltraTek met us with a box of goodies, there was a Team tshirt for each child, and a set of ear defenders. I was a little disappointed that I didn’t get a Tshirt, but the kids looked better in them than I would have so it was ok.

Silverstone is a lovely track, it is the heart of British racing after all. Great circuit for spectating either in the grandstands or the grass banks. The weather was great so we enjoyed a bit of racing.

We went to the garage and met Martin, he greeted us with a huge smile and a hug, that hug said a lot about the man, it was a tight hug, a hug that showed he cared. He was very polite, he lead Annabelle around the car, allowing her to touch it and then he let the children sit in the car. Annabelle said afterwards how much she enjoyed this experience because she has never seen inside a racing car before and has no memory of one and being allowed to touch the steering wheel with all the buttons gave her a good understanding of what one looks like.

Martin introduced us to his parents, who attend every race and we met his beautiful wife, Nicole. Everybody made us feel welcome.

We were introduced to the other drivers that were present at the time, Kelvin Fletcher and Tim Eakin. Kelvin came across quite quiet, but made pleasant conversation and Tim was a hit with the kids. Martin drives car number 53 and Kelvin and Tim drive in car 54, after a bit of banter between the children and the drivers about which car to support we left the garage for lunch.

At lunch Robbie recognised the Ginetta cars from Thruxton. At Thruxton The boys met a young racing driver called Ollie Wilkinson. We could not find Ollie at that point so we arranged to try and meet him later.

We watched the start of the British GT and sat at Copse corner. Annabelle loved the it, she could smell and hear the cars different engine tones.

We went back to the garage to experienced the garage during the race. Kelvin did an amazing job on his sprint in car 54. Martin Plowman took over car 53 and things did not go well, The car had problems and needed repair in the garage and we were asked to leave as it was about to get hectic.

Ideal time for us to head to the Ginetta cars to meet Ollie. Robbie straight away recognised him and greeted him with a cheeky smile. I did not go to Thruxton so it was a pleasure to meet the young man that Robbie has been imitating with his cars for the pass few weeks. I think Ollie has his first number one fan.

We watched the rest of the British GT race from the grandstands and soaked up the atmosphere.

Afterwards we went back to the garage to say thank you and goodbye. Martin gave us another hug, and thanked us for coming. Tim Eakin made Aidens day by giving him his race worn cap, complete with the sweat and smell, Tim said “wash it mum”, there is no way Aiden will let me wash it.

Martin helped us to raise awareness and he made precious memories with our family, and we will be forever grateful and hopefully we made some more BFF’s that day.



Extreme Tiredness

Why is my daughter asleep at 11am in the morning when she should be at school?

Its not fair, she is 11years old and should be full of energy and full of life but Batten Disease is taking it away from her. Annabelle slept for almost three hours, during that time I checked on her every five minutes, I was full of worry, I even cried at times.

Annabelle does not sleep that well at all, she can have days of which she only has a couple of hours sleep a night and times where she wont sleep at all. Annabelles behaviour reflects this, she has violent outbursts, anxiety attacks and struggles to concentrate.

Today was a day when her body said “enough is enough” and it wanted to sleep.

This is a symptom of Batten Disease, a disease that we are fighting together and we will carry on fighting.


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

.BFF logo transparent