Back in July, we began to notice some changes in our brave Robbie. His bowel movements had become more frequent, and he started to lose weight. By August, tests were underway, and by the beginning of October, we finally had some answers. In just a short time, Robbie’s energy had dropped, his appetite wasn’t great, and he had lost nearly 10kg.
The results pointed toward bowel disease, so on Monday we travelled to Southampton, where Robbie underwent both a colonoscopy and an endoscopy. These revealed multiple ulcers and areas of inflammation throughout his digestive system, leading to a diagnosis of Crohn’s disease.
Robbie was admitted right away to start treatment. He’s now on steroids to help reduce inflammation and has begun Infliximab, which he’ll continue with to manage his Crohn’s moving forward.
We’re so relieved — and incredibly proud — to share that Robbie is already responding well to treatment! His strength and sparkle are returning, and it’s been amazing to see him regaining that special light we all know and love.
Despite how much he dislikes needles (and there have been many this week!), Robbie has faced every challenge with courage and resilience. His bravery continues to inspire us all and reminds us of what true strength looks like.
A heartfelt thank you to the amazing team at Southampton Hospital for their exceptional care, compassion, and support throughout this journey.
Please keep Robbie in your thoughts as he continues to recover and adjust to his new treatment plan. Our little fighter truly embodies everything that Batten Fighters Forever stands for — strength, courage, and never giving up. 💚
With 2025 round the corner I wanted to give a brief round up of 2024.
As you are aware in January we lost our inspirational young lady, Annabelle. She was the driving force behind Batten Fighters Forever. Her life made an impact on so many people. The support received for the Charity and our family was amazing. Thank you.
We had our very first Sassy Walk, which was a tremendous success in fundraising and raising awareness. The day was a perfect way to remember Annabelle. It brought together friends and family. We are already planning Sassy Walk 2025!!! – Keep an eye out for more details later in the year.
With your support we were able to help 6 families by offering them grants. The grants were for a wheelchair power pack, towards a child’s bedroom, improve access to someones home, and seizure monitors. You have made these families lives easier. Thank you.
We also donated to Berties Helpers. Bertie was a young man who had CLN1 and gained his wings at the age of 4. Set up by his parents, Bertie’s Helpers provide practical help to families with a child with Batten Disease. They deliver food gifts during stressful, sad, and tough times. This allows families to spend more precious time together without worrying about getting to the shops.
We could not do any of this without you. Your love and support is very much appreciated. Thank you.
If you are planning to take on a challenge in the New Year, please consider us as your chosen cause.
We want to wish you all the best for 2025. Thank you.
This week was Robbies last week of Primary school. Having moved to the area in 2010, our children started there in September 2010, Annabelle in to the reception class and Aiden into Year 2, followed by Georgie starting the Pre School in 2014 and Robbie in late 2015.
The School have done a lot to support our children, they have adapted to accommodate their individual needs and have supported us. Their support has meant our children were able to thrive and have a future, they were always inclusive and they gave our children happiness.
A fantastic leavers assembly where the child compared the Primary school to a prison, all tongue in cheek humour but It showed how grown up the children are. There were dances and jokes and the tissues came out when the baby photos were shown and the memories were told.
In the evening some mums organised a leavers disco for the children. All of Robbies friends made a point of looking out for Robbie and caring for him, they danced, laughed and limboed. The foam was a massive hit.
As the children left the school on Friday the 19th July 2024, it also ended our 14 year relationship.
Robbie was crying, the staff were crying, other children were crying, and parents were crying. The School family will be missed but will always remain in our hearts.
Come September, Robbie will start full time at a special school whilst his friends move on the local secondary School.
We want to wish all the children the luck for the future and wish them all the happiness In the world – We will stay in touch.
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.
It is with sadness that we announce that on 16th January 2024, Annabelle found her wings, freedom and is no longer suffering. The end came quickly and in a way where she didn’t suffer too much.
Annabelle will want us to remember her for sassiness and all the positives.
She had a beautiful send off on the 2nd of February 2024 at her place of worship, with 175 in attendance.
A beautiful tribute read at the service by Andy – Annabelles Dad
Annabelle Hover – a fighter, determined, persistent, vocal, intelligent, witty, gave more to others than she realised, sassy
Annabelle exploded into the world on 28th September 2005 – literally, this tiny baby shot out of Lisa, skidding along the delivery table to be caught by the midwife. Our second born, a little girl to join our boy, Aiden. We were over the moon with joy – little did we know the journey she would take us on.
This isn’t going to be about Annabelle’s health challenges. She had many, starting from just a few months old. She battled through them though. She did complain but didn’t let them stop her doing what she wanted …
She was a Ballerina.
She was a Gymnast.
She was a Rainbow, a Brownie, a Girl Guide, a Ranger
She was a Flamenco Dancer ….. one time at 2 o’clock in the morning with castanets and clipity-clop plastic heeled shoes
She loved riding her bike through puddles
She loved horses. Insisted on a ponie party for her 6th birthday. And enjoyed riding at the stables in the New Forest.
She loved dolphins and was able to swim some twice
She lover penguins, a love she shared with her little brother, Robbie
She loved her dog Teddy
She was a racing driver for a day. Driving blind around the Three Sisters Racing Circuit. She crashed … but it was the instructors’ fault. Who she learned a few swear words from.
She enjoyed cooking. Rocky Road was her favourite. When she was 3 she made breakfast for the family, climbing onto the worktop to get things off the shelves. Again, it was probably about 2 o’clock in the morning!
She was a journalist and editor for the Rare Revolution Magazine
She tried influencing on social media with a few random posts
She loved school, attending St Ives Primary & Nursery School, Ringwood School and the Victoria School – she made an impression on them all. She was extremely bright academically and proud to gain her GCSE’s
She loved making things with her hands. Loom bands, crafts, beading, sowing, jewellery. Forget the mess these things often made across her bedroom floor, the items she created through feel alone were amazing
She was an adventurer. Taking part in the Duke of Edinburgh scheme. Climbing to the top of Ben Nevis, gathering cuts and bruises on her legs. We only planned to go half way, but she insisted on going to see the snow at the top. Skiing – if Aiden can do it I want to do it – and she did! Despite being blind!
Annabelle enjoyed sleeping in tents, whether for a festival party in the garden or campsite in the New Forest. There was one time when Aiden and I lost her … but we got her back in the end.
She had a habit of wondering off. Weymouth beach also springs to mind … but she came back in the end
She enjoyed theme park rides and was fortunate to go to the parks in Florida with the family and then with Dreamflight, to EuroDisney with the Guides and Poulton’s Park on a few occasions. We nick-named her the “phantom screamer” as she had the habit of raising her hands and screaming on different parts of the rides to everyone else.
She loved playing UNO and was wickedly good.
She was a girlie girl. Although in her early years in Weedon she mainly played with the boys, often getting in trouble for being too rough, or for biting them! But she loved her hair treatments, bath bombs, smelly candles and jewellery
Annabelle loved to boogie, with her unique moves and unforgettable shimmy
She loved to sing and was a fan of the Vamps. She saw them in concert and met the band several times. Brad was her crush but she formed a bond with James and singing with him is one of her top highlights.
She loved Christmas and birthdays. She would always be focussed on the next birthday in the family – the year starts with Daddy’s in January, then it’s Georgie’s, then Aiden, Mummy, Robbie’s and then her own. Annabelle’s way of counting down the year to her own birthday celebration. Her 18th birthday party was an absolute joy thanks to everyone that came along – she was beautiful and very happy.
She gave our family experiences we may otherwise not have had – Florida, the Vamps, LUSH, skiing, Girlie trip to Liverpool, our very recent family Christmas holiday which was special
She was a sister and best friend to Aiden, especially in the early years.
She tried to be the best big sister to Georgie and Robbie. She especially tried to look after Robbie – they were united by shared challenges, naughtiness and laughter
Annabelle, you were our first little princess. Our SassyBelle. You gave 18 years full of adventure and cheekiness. 18 years where you taught us and many others how to be determined and fight for what you deserve.
Annabelle, thank you for your love and the memories you have given us.
Apologies, I know it has been a long time since our last blog but it has been busy.
Annabelle has had a tough 12months, Her seizures became uncontrollable and was admitted in to hospital three times, this impacted her health dramatically. With a big medication overhaul the seizures are back under control and she has returned to her Sassy Self.
Annabelle finished the school year in August 23 on a very positive note, looking forward to her new School year to start in September and she was also getting very excited for her Birthday, her 18th Birthday.
This is a milestone that we did not know would come, a future that we could not see. We were so happy that it was happening, and to have Annabelle so well, we had to celebrate.
Annabelle wanted a disco, She wanted traditional party food, She wanted decorations with balloons, She wanted sweets and most of all she wanted her friends. Annabelle wanted it so we did our best and gave it to her.
We had three hours of non stop dancing, Annabelle showed off her dance moves and singing skills. There was a moment that I watched from a distance as I was taken back by emotion, Annabelle, her sister and her eldest brother and friends were dancing to the Hokey Cokey, a vision I thought I would never see.
The food went down very well. In fact to well, the cheese and pineapple on cocktails sticks all went leaving some party goers disappointed. The sweets were enjoyed by many giving them a sugar rush.
Annabelle received the most amazing gifts and she was loved by everyone. It was truly a great day and memories were made for all of us.
It’s been a while since we’ve added any blogs to the website, mainly because of the hustle and bustle of life but particularly due to changes and challenges with the health of Annabelle and Robbie. I’ve decided to provide this update because we have experienced a significant deterioration of Annabelle’s condition and want to share this to advise and help others.
Sleepy modes, anxiety and depression
Since the end of the summer holidays Annabelle has experienced a few of her sleepy periods. These are times when she seems to want to do nothing but sleep – which we often compare this to a car going into “limp home” mode – where she will be very quiet, often non-responsive, and needs encouragement to eat, drink and do the basics. These have lasted between a few days and several weeks. This resulted in missing some school in the first half of the Autumn term. When she was at school she was increasingly experiencing frustration and anxiety.
Annabelle is in the last year of secondary school (year 11), a time when students are making final preparations for exams and planning their post 16 journey – sixth form, college, apprenticeships. A year ago we knew that Annabelle would likely struggle to sit her GCSE exams and that we would be looking at specialist education setting for post 16. We started the processes to seek adjustments for her exams. We visited a specialist school in January which Annabelle very much liked and she decided is where she wants to go from year 12 and ideally start 1 day a week in year 11 to access some of the support and subjects that her current school cannot offer. The process was started with the Specialist Educational Needs team at the council, which is always subject to budgets, panel approvals, etc. When school restarted in September, Annabelle had received no answers about where she was going to be post 16 and was experiencing the almost constant discussions at school about exam preparations, mock exams, tests and assessments – she didn’t know whether she could sit exams or be assessed through other methods and did not know if she could go to the specialist school that she had chosen – this all created a tremendous amount of anxiety.
Anxiety, along with tiredness, triggers a deterioration in Annabelle’s health and well-being. She experiences rapid mood changes and depression. We are fortunately to have support from Dorset’s ID CAMHS unit which has helped with coping methods and ways to communicate feelings. Earlier this year they prescribed medication (Diazepam) for Annabelle, to be used in situations where she was experiencing a high level of anxiety where coping techniques and anything we say or do simply doesn’t help. This medicine rapidly calms and suppresses the anxiety, often making Annabelle fall asleep.
Delirious and psychotic
In October we had an enjoyable break in our motorhome on the Devon coast over the half term holiday week. Annabelle was a bit sleepy but otherwise enjoyed time on the campsite, a few visits to places nearby and swimming with Robbie and Georgie. After the half term she went back to school but was sent home as she was falling asleep in class. She remained at home for the next few weeks suffering her sleepy episodes. She was much better in the third week of November and managed three straight days at school without problem, just before our first overnight visit to Naomi’s House and Jack’s Place.
Due to COVID restrictions we have had a patient wait since initially contacting Naomi’s House in 2019 to be able to make our first visit. The first visit always consists of a family stay over in order that care plans can be established and parents are to hand in case a child does not settle. Both Robbie and Annabelle had their own rooms, with staff on hand and monitoring to ensure their well-being at all times. There were plenty of activities and play facilities. Georgie and us parents stayed in separate accommodation and enjoyed the respite. Annabelle enjoyed chatting with the staff about everything she loves and she enjoyed making Christmas decorations and other crafts. She shared that she enjoyed being at Naomi’s House and Jack’s Place because she knew that she would be supported if something happened to her while she is staying there. We headed home on the Sunday morning and Annabelle was very upbeat, was very chatty and talked a lot about the meal she was going to make at school the next day.
Annabelle’s chattiness turned into constant talking, sometimes with us and often with imaginary friends. This went on for 48 hours before she finally crashed and fell asleep. When she awoke, she was again in a different world to the rest of us. Talking to other people. Sometimes she was very happy speaking to members of her favourite pop group (The Vamps), singing and dancing but sometimes she was very scared. The ID CAMHS doctor made a home visit on the Thursday and witnessed this. He was as concerned about this as we were and immediately organised blood tests to rule out infections and prescribed Lorazapam to Annabelle to help her settle.
The following week things worsened and Annabelle became much moodier, scared and violent. The medical support has now prescribed anti-psychotic medication (Olanzapine) to help control the mood changes and sedate her.
Many times in the last weeks I’ve thought (hoped) that this is just a mode that Annabelle will snap out of at any moment, similar to her sleepy periods that have lasted a few days or weeks and then back to normal. I’ve looked for reasons, for what has triggered this, for things to blame ….. the lack of progress and answers about schooling & exams and the unnecessary stress that has caused ….. how safe Annabelle felt at Naomi’s house and has this allowed her to stop fighting knowing she will be looked after
It’s now clear that this is the next phase of Annabelle’s fight with Battens. The new normal that we will need to manage.
I can try to imagine, but only Annabelle knows what it feels like to be experiencing what is happening in her head and the effects of the cocktail of medicines she now takes.
What’s next
The approval for the specialist school has just come through and Annabelle can start 1 day a week from mid January. I suspect the transition from mainstream to the specialist setting will now need to speed up.
Our priority is to help Annabelle to be as happy as possible and give her the best possible care.
An Update on Annabelle’s Health – Batten Disease Awareness Day
Annabelle is finding life more challenging as her mental health is deteriorating. She has episodes of extreme tiredness and they are becoming more frequent. We can see a pattern of events that lead up to one. Annabelle has high levels of anxiety caused by stresses of daily life. They can push the anxiety up to a point where her body can not cope so she goes into a sleepy episode. During these episodes Annabelle will sleep a lot, her dementia symptom’s are apparent and she does not know which day it is, whether she has eaten or not, and will have no memory of events. She will have periods of uncontrollable crying brought on by fear and she will also have hallucination – these can be very scary for her and for us. These episodes can last from a couple of days to a couple of weeks and after each one she returns back to her normal self but we are very much aware that one day these episodes will be here to stay and she will not return to herself.
Her mobility is getting slower and her aches and pains are increasingly forcing her to use the wheel chair around school and visiting shops. She loves her swimming and she can swim independently, giving her the freedom she craves for.
Annabelle has remained seizure free since her first and only one back in 2019, and remains on the medication.
Annabelle remains in main stream school and has plans to sit her GCSE’s next summer but there will be options for her to get recognised for her education if she cant sit them. We reduced her curriculum last year so she will not sit as many subjects as her peers. We are considering her sixth form options and this will most likely be in a special needs school setting for the flexibility of education and accessibility around the buildings as well as access to after school clubs.
Annabelle will not let these new challenges get in her way. She loves beading and making jewellery and she has now set up a Facebook page to sell her makes. With the support of the Amber Trust she is having weekly singing lessons which is perfect for her love of music. Annabelle is still passionate about girl guiding and she is now a Ranger, loving the badge work and socialising with the other members. We cannot forget her love for The Vamps of whom we will be seeing in September at Bournemouth, fingers crossed COVID will allow.
Robbie’s eyesight has deteriorated fast and now, at the age of 8, he has very little useful sight left. He only has peripheral vision. Robbie relies on his cane for navigation, reads braille and uses devices in the kitchen such the talking scales and drink level indicator.
We have noticed a massive change in his behaviours. He has become very hyperactive and struggles to concentrate, he is like a coiled spring. He can also have sudden aggressive outbursts that don’t seem to be triggered by anything. Robbie’s levels of anxiety are increasing and he has developed worries of things that didn’t bother him in the past. One of these is loud noise, especially in busy places, he holds my hand tighter, sometimes at school he wears ear defenders to cut out classroom noise.
In February this year Robbie had is first tonic-clonic seizure whilst at school. He was in the playground and luckily his TA was there to catch him. He was taken to hospital via ambulance as his recovery was slow. Five weeks later he had his second seizure. This time he was at home in his bedroom. It took hold whilst he was sitting on his bed and it made him fall backwards off his bed. This seizure lasted just under 5 minutes. His recovery was slow and it left him very scared, it took a while for him to recognise us.
We made the decision to start medication to manage/ prevent seizures. As with but all medications there is a list of possible complications and with epilepsy medication, the patient can suffer with behaviour changes. With Robbie’s behaviour already at a level that we are struggling to control we asked for the choice of medication to take this into consideration.
Robbie has started taking Lamotrigine. Each week the doses increase until it reaches his final dose. On the second week of the medication Robbie had his third seizure whilst he was asleep. We were alerted by the sleep monitoring system and we were able to be by his side quickly.
Since that third seizure, Robbie has not had a tonic-clonic seizure but he has had what appears to be focal seizures. He will complain of being really hot, then cold, he will go clammy, pale and will feel very sick. These have lasted for about a minute with recovery within five to ten minutes.
Despite all these new challenge’s that Robbie is facing he does not let them get in the way of living a happy life. He continues to ride his bike in the garden and play football at home. He now has started drumming lessons with the support from The Amber Trust. He practises most days and he has a natural rhythm. He has lots of good friends who adapt their games so he can join in and now he is making new friends at Cubs.
Robbie Playing the drums
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