BFF Charity … the first 2 years

We learned in the first few years of our family journey just how hard it is to face the challenges of dealing with the disease and needs of the children. While there is support in the Batten Family community and a small number of charitable organisations that provide help, there are limitations and gaps.

In April 2019 we registered Batten Fighters Forever as a charity and in the first 2 years have raised around £25,000 in funds that has enabled grant awards to help families with equipment and services they can’t get support elsewhere.

Here’s a short video reflecting on the first 2 years of BFF as a charity

Learning Braille

Sight is quite often the first ability to be lost by children with Juvenile Batten Disease. Progression onto learning braille is a natural step in the journey to cope with this. The challenge this presents seems to be related to the age at which functional sight is lost.

By the time Annabelle lost her sight she had a very good reading capability. She picked up braille very quickly. To her credit she was very determined and worked hard to effectively learn a new language alongside her normal school learning.

Robbie has lost his functional sight at a much earlier age so he is learning braille in parallel to reading and spelling abilities. This appears to be a greater challenge but he is making great progress with the fantastic support of his school and VI resources.

See the videos below showing progression from Sept 2020 to March 2021

September 2020 – Robbie learning braille
March 2021 – Robbie learning braille contractions

My Garden

Blogger Belle here, as you know I have Batten disease, so most people with a disease like me get to make a wish.  I decided to make my wish of a garden just for me with things that I love to do. My nurse at Julias House was going to put my wish to Make A wish when this stupid Corona Virus struck and they are not accepting new wishes.

My dad being the expert at DIY and being at home all this time decided he would try and help me out and grant some of my wish by creating me a sensory garden, somewhere for me to chill. He has built me a raised bed with herbs because I like cooking, also he built me a swing seat that hangs from a pergola. I also asked for a water feature, wind chimes and lots of Lavender. Dad did an amazing job and I’m so happy.

I’m hoping that after this corona virus has passed and make A wish are accepting wishes again I can apply for the rest of my wish. The rest of my wish is really special to me because I want to play with my younger siblings and Robbie will also be able to use the garden after I cant. I really really want an in ground trampoline and a basket swing. I love to jump on my trampoline but I now struggle to get on it and I’m to big for our swings set, Well, we have had them for 11years!!!.

I hope you enjoy your summer, I know I will sat in my sensory garden.

My new bed

Written by Annabelle

Today my parents got me a new bed just like a hospital one.

It goes up and down, also you can lift your legs and sit up at the same time. It took a while for my parents to get home and then they had to set it up because my mum had to unscrew my old bed to clear the space for this new bed. 

Mum had some help from my siblings to carry the old planks of wood from the old bed which made the job get done faster. Then dad and Aiden carried the new bed upstairs and set it up in my bedroom. 

Mum taught me how to lift my legs up and down, I can sit up and down, she also showed me all the buttons on the remote. It was very funny when mum was showing me because I had no idea what she was doing. It was very cool and amazing.

I really like this new bed and it will also make it easier for my mum because when i’m poorly as she has to lift me up to a sitting position and get me up but this bed will do that job for her. Thanks for reading

Do you like my Vamps posters??

Robbies Wish: Meet Santa in Lapland

Thanks to Make A Wish, Robbie got to see Santa before his eyesight totally goes.

Such a wonderful adventure searching for Santa and experiencing reindeer and husky rides, tobogganing, visiting the post office, Wendy Wood’s workshop and playing with the elves along the way.

Please watch the video to get a flavour of the fantastic time we had – creating lasting memories for the family.

Thanks to everyone at Make A Wish and Canterbury Travel.

P.S. Look out for us on Channel 5 on 18th Dec!

An Update

It has been a while since we have shared an update on our children’s health. Their health has been stable with no major changes …. well ’til last week that was …..

Last Monday evening, 29th April at 18.42pm, Annabelle fell to the ground and had her first Tonic Clonic seizure. Despite everything that I had read and been guided to remain calm, I screamed and panicked. Luckily, Andy came home and leapt into action. It was the scariest thing I had ever seen, Annabelle did not look like Annabelle. She went grey. She made hideous noises and her body was so tight. Young Georgie witnessed the event and was scared by the situation but once everything had calmed down and Annabelle went into recovery we were able to comfort her. We called the paramedics who came and checked her over and were happy with her speedy recovery.

The next day phone calls and emails were made to make Annabelle’s consultants aware of the situation. Annabelle now has a seizure protocol in place and has started medication. She has returned back to her normal self and has not had any more seizures since. We are hoping this will be the case for quite some time.

Let’s update you on our cheeky Robbie …. we noticed last October that he was struggling with his eyesight so had his consultant authorise our local optician to prescribe glasses for him. The optician advised that the glasses have a weak prescription but they will sharpen up the vision he has. Just before Christmas we noticed he was cautious of where he walked and becoming more clumsy. The school had also noticed that he was struggling to read the board, pulling things closer to him and they had also noticed him bumping into things.

We knew that his eyes had deteriorated, but by how much we had no idea. We had a hospital appointment last Tuesday, that confirmed our suspicions but it also surprised us and his consultant. Robbie’s eyesight has deteriorated to a level where he is now registered severely visually impaired (blind). He has received this registration two years ahead of when Annabelle received her registration. This is just one example of the rate that his eyes have changed,  last December Robbie was able to play crazy golf with no problem, but when we went in April he struggled, it broke our hearts watching him trying to play the game he loves.

The beginning part of last week was just a kick in the teeth, and we struggled with the heartache knowing that Battens is taking our children. This week, however, we have been busy planning fundraising events and ways that we an raise awareness. Please keep following our cause and let us know if there is a way that you can help.

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BFF Jurassic Walk

File 06-06-2018, 20 51 23.jpegOn the 2nd of June a team of 21 amazing people took part in the 50km challenge walk of the Jurassic Coast 100 from Lyme Regis to Exmouth.

Starting at 7.45am the team left Lyme Regis Football club and headed though the “lost world” of the Under Cliffs towards Seaton. This stretch was mainly in the shade and the ground was slippery. A few of the team members fell and were injured, yet they carried on. Just before Seaton we were greeted by our first water stop, jelly babies and coke, these were much needed.

After Seaton we headed towards Branscombe. On route to Branscombe we walked through the beautiful village of Beer, no time to stop and have a pint mind you. We carried on over the White Chalk cliffs to Branscombe.

Leaving Branscombe we faced the toughest part of the walk towards Sidmouth, the path takes you from sea level to heights of 150m, over and over again. It was exhausting with every incline and painful with every decline, it took it’s toll on our knees.

Once at Sidmouth we enjoyed the pleasure of flat ground along the seafront to only then be confronted by a steep climb to Peak Hill and then a few rolling hills into the sleepy town of Budleigh Salterton.

One last climb (we heard those words many times) took us over to West Beacon before we passed the resort of sandy Bay, we came to the Geoneedle, marking the end of the Jurassic coast with an easy flat 2km to the finish line. Those last 2km were the longest we have ever walked.

16 out of the team of 21 completed the walk, those who didn’t manage to get to the end gave it their best and were only beaten because of injuries. We had two great support drivers that rallied us along and met us at various points so we can change plasters and stock up on supplies.

Along the way we were stopped many times by members of the public enquiring about Batten Disease. Several gave cash donations on the spot – inspirational.

A great day. A fantastic achievement by the whole team. An awesome shared experience. Great awareness raising and much needed fundraising.

Bath Bomb making at Lush

We have encouraged Annabelle to think of a list of things she would like to do before she turns 18. Ticked off that list so far Annabelle has been to Florida, Disney Land Paris, she has learnt to ski and the next thing on her list is to make a Bath Bomb at Lush.

We approached the Lush store in Southampton and met with a lovely Australian girl called Mallory.  Mallory was fantastic and listened to our story,  planned the Lush experience to be tactile and full of enjoyment for Annabelle with her friends. Mallory organised it to be a gift for us to make memories and to fulfil Annabelles wish.

Friday the 13th, the day of unlucky occurrences? Not for us, the day of the lush party has arrrived. Annabelle chose two friends, her longest, closest friend Siobhan, and her newest supporting friend Ellie. Georgie also had two friends, Katrina and Jessie.  As we were walking towards the Shop the girls could smell the delights that awaited them, we were greeted by Ashleigh and Mallory.

The first activity was to make the bath bomb, the Lush product called “sex bomb”, renamed for the occasion as the Annabelle bomb. It has a fragrance of Jasmine, Ylang Ylang and clary sage with a pretty rose in the middle. The girls took it in turns to mix the ingredients together, and then each made their bombs. Annabelles words were “this is so cool and fun”, she had a smile from ear to ear as she was moulding her bomb.

The second activity, Fun Bar Pictionary. The fun bar is a product that feels like playdough but you can use it as a bubble bar, solid shampoo or soap. The idea of the the game is that someone is told an item, that item is then modelled then the other guests guess what the item is. Today, it was the first time ever, there was a twist, everybody was blind folded, allowing the girls to experience the activity the same way as Annabelle. The girls all managed to guess what was modelled by touch alone and they all said how weird it was not being able to see.

The Third activity, Bubble bar cocktail. Bubble bars are bars/shapes that you crumble into the bath and they change the colour of water, produce a beautiful fragrance and of course they make bubbles. The girls had to choose from a selection of crumbled bubble baths and come up with there own combination to be judged by their colour, smell and bubble quality. The younger girls just grabbed everything and put the crumble into their jugs, the older girls thought long and hard about theirs. Poor Sam had the task of judging. He chose Bubble Pop, a cocktail produced by Ellie and Annabelle’s came second, she named hers “Pink Sunset”.

To finish the experience all the girls got to choose a bath bomb or a bubble bar to take home. The girls loved smelling every bomb or bar they could find, Annabelle chose a fidget spinner bubble bar. All the girls left with a smile on their face, and the car journey home was full of chatter about their bombs and a rather strong fragrance from their party bags.

We would like to say a massive thank you to Mallory, Ashleigh and of course Sam at Lush, Southampton, you made the experience very enjoyable for Annabelle, and you helped us make memories that we will cherish forever. We will be popping in to say Hi very soon.

 

 

 

A blog from a guest – a member of the BFF Bournemouth marathon team

In January this year a group of us decided we wanted to run an event in the Bournemouth Marathon Festival 2017. The Festival was in October and ages away, so wouldn’t be a problem!

We signed up and wanted to run for a charity; but which one? After throwing the usual suspects into the pot, one of the kids asked: “could we run for Annabelle at school as she is blind, and we have done charity days at school for her”.

Perfect we thought, but little did we know… After meeting with Annabelle’s mum, Lisa, for lunch, we learnt about Juvenile Batten Disease and the BDFA. The more we learned, there was no going back – there was only one charity we were doing this for. We were doing this for Annabelle and Robbie, and the whole Hover family.

So training began. For some of us it was about getting back into the habit of running. But for others, we hadn’t run even 1k in a very long time and struggled!

The months went by and we were still running and training. Injuries started to creep up on us, and then all of a sudden, summer was here and plans got in the way. Every time we got together we talked about the Marathon Weekend… but it was still ages away.

Fast forward a few months and the sponsorship was coming in. The running vests and race numbers arrived – we actually have to do this!

Race weekend was here, and it’s safe to say we were all apprehensive.

The weekend started with the kids 1k run. George dragged his dad, Alex, round the course, beaming with pride – he was running for his friend Robbie! Lucy was loving every second in the lime light, waving at everyone.

Next up was the junior 1.5k. Albha, Clodagh, Maisie Rose, Maisie Minchin, and Lily running amazing races. Those twins can fly!

That afternoon it was the turn of the 10k team. To say we were nervous was an understatement! But Alison ran an impressive 46:32 mins; Lynn just over an hour; and Carriann under her 1 hour 30 target – woohoo!

The next day was the half marathon team’s turn – the big one. And how impressive! Sarah, Alex, Mike, and Simon all running amazingly! They all set brilliant times, and were still smiling while doing it. And Mike didn’t need St John’s in the end – he not only survived, but thrived!

Thinking of Annabelle and Robbie saw us all to that finish line, and as a team we are so proud of ourselves.

We all took turns being the BFF support crew across the weekend. We were there cheering each other, shouting encouragement, and getting some great photos. The support from Team BFF was outstanding and helped push us all to the finish line.

This was an amazing weekend that saw us all wear our orange vests with pride! We couldn’t have run for a better charity.

As the last runner crossed the line, we had a lump in our throats. We all did it! And actually all did it well. We may not be able to walk for a few days (and have a few minor injuries between us), but we did it for BFF.

So that was the Bournemouth Marathon Festival 2017. What next? Anyone up for 2018? Maybe the full marathon?…