Addy's Batten Adventure

31/08/2026

31/08/2026

On the weekend, Addy, Samuel, and a few friends did something amazing again! Look at Addy's face as she LOVED every minute!

Who says disabled kids can't have fun obviously hasn't met Addy!

31/08/2026

It's at times like last week when you hear the passing of such children that breaks though your denial of this disease that hurt. This is Holly, and heartbreakingly she gained her wings last week 💔

A few years ago, we had the joy of meeting her, seeing her run around a pool table with smiles and giggles on her face, enjoying an inflatable bouncy castle, snacking on crisps as she went.

This disease is just so cruel but we send Emily Weston and James lots of love today, especially as today is Emily's birthday.

23/08/2026

The hugs will come....

Over the past few weeks, Addy has had some well needed "me-time" away from us 😉 Day's out to Julia's House Children's Hospice, a well deserved R&R break at Helen & Douglas House, meant that we were without our Moo for a few ways (well Hayley went with her), so Samuel and I popped up Liverpool to see Grandparents and watch a pre-season Liverpool FC match with Grandad.

After about 6 days of being apart in total, what is always noticeable is the time that it takes for Addy to be orientated back in the home - and specifically around us. Usually Addy is SO tactile, LOTS of constant cuddles laden with spontaneous kisses for good measure. However when Addy has been away from us for a while, the return to the family unit is different from a cognitively normal individual.

A cognitively normal child upon seeing a loved parental figure will engage in a longing embrace.

For Addy, an affected individual, a readjustment period needs to happen. Almost like the brain is questioning, "Where have you been? Who's looking after me now? Who am I reliant upon in this moment?" And there is a transitioning of primary care-giver that takes time, isn't instantaneous, and will take days before we get kisses or even a cuddle.

Are we sad? A little.
Do we understand it? Of course we do, we are all different.
Will we get them soon? Yes - infact it took 3 days of asking before Addy FINALLY gave me a hug.

It's just one of those things.

13/08/2026

LOOK AT THIS GUUUURRRLLL GO! GNARLY DUUUUDE!

Thanks to a few amazing people, they enabled us to go on holiday this year and this was one of the phenomenal and few activities that we were actually able to do as a family.

The absolutely out of this world charity called AdSurf have a few instructors and an army of volunteers who come to give their time to allow adaptive and inclusive surfing to happen for those who otherwise wouldn't be able to enjoy the waves. If you are EVER down in Cornwall, UK, then check them out and get down there! You won't regret it!

Addy couldn't wait, so we thought we'd get in the water and show you her joy!

12/08/2026

Caring through conditions.

We all know that caring takes a lot from an individual but what happens when it actually changes you? Here is a warning for carers who "just keep going..." no matter the cost - because that was me.

A few weeks ago I was diagnosed with Functional Neurological Disorder (FND). It is aptly named, where there is a neurological disordering which affects the functional ability of the body. I had been dealing with constant pins and needles, sun-burning sensations, dizziness, brain fog, and intense right sided fatigue/weakness since April, and we didn't know why. MRI's, nerve conductor tests, trips to A&E in the early hours due to overwhelmingpain, 30 viles of blood later and physically there is nothing wrong except all the symptoms above were still persistent and growing. And so the Neurological consultant asked the question, "What is your home life like?!"...and there it was...

Apparently when you are exposed to intense stress or trauma for too long, over many years...this disorder can become a reality; manifesting in all types of ways including seizures, tremors, visual disturbances and a possible million other symptoms as the brain neurologically shuts down pathways to deal with the stress. The symptoms eb and flow differently each day, and it's simply the nature of the condition. Apparently the hardware is fine, but the neuropath ways or wiring due to stress, have changed the Functional ability to perform daily tasks. And so....how do we look after Addy? How do I continue caring for Addy when I'm physically struggling myself? Well, we are now having to apply for adult social care (for me) and life has become a whole lot more complicated.

It's so bloody hard. I stopped employed work to care for our child because she was deemed as needing 2-1 care, but the level of stress over the years causes your own state to break....

This is not OK, and we are now suffering for trying to do the right thing. How do are people supposed to survive this? I cannot simply stop caring for Addy, and so I rest when I can - and sometimes this means Addy uses my face as a fiddle toy.

Our regular needs are not simply carers and prayers, but finances, meals and love.

23/07/2026

This week we had the pleasure of going back into Samuel's old Primary School, Grange Junior School, to give out an award which was named in recognition of Addy and the battles we fight as a family "The Batten's Award for Resilience."

In 2020 when Addy was diagnosed, Samuel's old school helped him, and us, to come to terms with what it would mean for the future. They helped with emotional support and provided numerous shopping bags of food for us as a family. They helped with bursaries for school trips, and held awareness days of Batten Disease. They were an absolutely huge part of our families support system.

At the end of each academic year, yr6 students attend a leavers assembly with their parents, where 6 special awards are given to individuals who have shown tremendous characteristics in specific areas that the school aims to instill on the pupils, and one of these character awards is to a student who has shown resilience.

As I was called to the front the Headteacher spoke the following words, "Resilience is the ability to pick yourself up and keep going. Words like perseverance are often used alongside resilience, and we didn't have to go far to find a family for whom resilience is a daily challenge; and we are delighted that you have agreed, and continue to agree to lend the charity's name to to this award. So in recognition of the resilience that they display every single day, this is the Batten's award for Resilience."

Resilience is one of those characteristics that many people want, but few truly ever aquire. It's rarely born out of having a wonderful, happy or easy journey, but it's a side product of having to walk a difficult path - not because a person chooses it, but because it often felt like it was the only path available.

Having a child with Batten disease, we know all too often the many dark days. On Tuesday, I didn't know the context of the child who won, however if they won the award for resilience, I know they have already had to walk a challenging road, BUT they have chosen to get back up and keep moving forward. And so I applauded loudly for all they had overcome whilst still wearing a smile.

20/07/2026

LOTS of stop breathing, nostril flaring, unfiltered, fart inducing, infectious spreading, gaze adorning, side aching laughing here!

Whilst this video was taken at home, the same clip and moment happened last week.

Imagine the scene as we made oir way through Bristol Royal Hospital for Children reception and edged our way to her full day of treatment. As we pressed the circular number 5 on the elevator, a women plunged her hand in the way of the closing doors and stopped us on our journey upwards towards the hospital ward. She illuminated the number 4 and looked at Addy just as she started her most infectious giggle. It was one of those moments if a sound had colour, it would have covered the inside of that mechanical space into a bright rainbow cube. As Addy really opened up and giggled away, the rest of the elevator turned to join in with her giggles, spreading like Mexican wave at a football match, not even aware of what Addy was so besotted by.

Totally unaware at the passing time or stops that were being made, the announcement came over the speakers, "Level 5, the green floor...."
"Oh, Thank you this is our stop" I said to the crowd as I made my excuses to exit the carriage.... The response that replied totally caught me in my own amazement...

"Oh Sh*t...I was enjoying your daughters laugh so much, I missed my stop..." and with that the same lady who almost had her arm caught in the doors fled out the opening elevator, to the stairwell and away back down a flight of stairs to her correct floor (hopefully).

The crazy thing is, Addy had zero clue who was watching her in that moment, but it just goes to show you that sometimes you can be totally unaware of the happiness you are sharing just by being you.

I dare you not to be smiling by the end....not a chance!

17/07/2026

Birthdays - When time allows....

Yesterday was my birthday, and just because it was my birthday, it doesn't mean you get to simply choose to "not do", especially when yesterday it was time for Addy's fortnightly hospital treatment day. The thing is, Addy's treatment gives her time with us, it prolongs her life and skills, and that time is so so precious. So in our minds it's not an option to simply not go.

In previous posts I had eluded to me having ongoing medical investigations and so I have been unsteady, confused, and out of action a lot recently - which has meant Hayley has taken on a huge amount; but yesterday's treatment day was one step too far for her so I went. Wobbling, unsteady, and achey I accompanied Addy to the hospital. Before I left for hospital there were no big celebrations, just a 5.20am alarm to get out the door as it simply wasn't the time to engage with it what a birthday is all about.

As I woke and started preparing morning medication, I lifted my gaze and stared at the wall before me. Above the kitchen splashback it says "time is our gift". This phrase has been a slogan of our marriage, a constant reminder to never take time for granted well before Addy's diagnosis came along. And so I readied myself for the day ahead.

Addy's treatment when fantastically well and we came home. It was then that we opened a few gifts and cards, rested, and went to bed. A huge shout out to my loving and thoughtful mom-in-law for making my "fruit cake" as sugar is on of the things I am having to remove from my diet. She spent such time making this gift! Linda Kendall-Ball

As I sat in the chair whilst Addy slept in the hospital bed I was reminded of the phrase "time is our gift". Despite my present condition (which wasn't ideal) I was glad to be able to give "necessary time" to Hayley at home to rest. She was clearly unwell and needed "time".
I was glad to give Addy "time" to get treatment, and the "time" it gives us with her.
I was saddened by all the "times" Battens Disease derails opportunities for joy, celebrations...and sleep.
I was thankful for loved ones who took the "time" to send me messages of well wishes.
And I was reflecting on the "time" that seems to be whizzing past.

At some point this week I hope to have "time" to celebrate, but for now my birthday was simply a time of needing to get on and be Dad/carer, and doing what needed to be done in that singular moment, from who was most able in that second regardless of the day.

Please don't think that this post is anything about me trying to stroke my ego, or boast about highlighting exhaustive efforts to care, but simply highlighting how the life and times as a parent-carer is more wildly different to that of the world. And for those who have lost loved ones - you would give anything to have that "time" back.

For all those who are in the unpaid caring world for a family member - we see you.

13/07/2026

A few weeks have passed since we posted, and so much has happened, so here's a photo dump!

But in all the dizzying madness there has been joys of friendship, heartfelt moments, bewildering battles with insufficient social care systems, and chronic illnesses. The truth is life has been made harder by new chronic illnesses which we have been battling but not yet know root causes (so we'll share in time) - all we know is that they are founded in chronic stress for elongated periods of time.

Parenting a disabled terminally ill child isn't about simply getting on, but decisively choosing what needs to be prioritised every day. Regardless of who you are on the earth, we all have the same amount of hours in each rotation of the sun - it's just how we spend them that changes. So the majority of our sun-spent hours are used around preparation, doing whilst recouperating, and fighting for change.

In the last few weeks we have endured the stress of potentially going from morning carer help, to zero help. This is due to social care systems simply not being adequate. Panels of people needing evidence and applications to "reapprove" care contracts with agencies, just incase the child has suddenly "got better" and doesn't require help anymore. But what happens to those children like Addy who's needs will only ever INCREASE?! Families continue to go through the same processes. We have been left stressing not that Addy would be deemed not needing care, but simply her case wouldn't be seen by "a panel of experts" due to not reviewing her case. When you bare this in mind, knowing that families then have to care alone because the panel-who-only-meet-once-a-week didn't get around to seeing your case, you understand the anxiety.
Thankfully Addy's case was seen and approved, but these contracts are only ever 3 months long. It's not just the anxiety of What-if's, it's the knock on's of having to shift "preparations" around to make life copeable.

Another instance of madness is that schools in the UK are largely not made to withstand the sweatbox weather we have had recently - and wheelchair users are even more susceptible. Many of Addy's school peers take the accessible bus system to transport them from home to school and vice versa for the return leg at the end of the day. One day last week, we received a message to say that all parents (regardless of whether your child uses the bus transport) are being requested to collect children from school, not due to the heatwave, but because after the transport system had dropped the pupils off, they had decided to cancel any return trips for the day. No reason. No additional information. No comeback. And so the school was left in the lurch to arrange 300 personal pick-ups for pupils throughout the day...all because "the system" wasn't sufficient.

Oh my word....next...medicines! What is the issue with controlled drugs?! Diazepam? Gabapentin? These drugs are NEEDED for a children's welfare, and therefore ours. And what happens when you can't get them? Somehow it's the parent's fault because we didn't give enough time when ordering? We would have given more time but we thought 10 days were enough....

(I'm fully aware this has turned into a rant now - sorry....)
..so you take the avaliable tablets because of the emergency status and you're told to cut it in half, crush it, and disolve it before syringing it.... but what about the tablet that isn't made for splitting (even with a pull cutter) accurately for a child who's medical needs are so finitely poised that you are scared because the prescribed 5mg dosage of liquid you usually give is hard to m cut 5mg from a 10mg tablet....not 6mg, not 4mg...but 5! All because "a supply couldn't didnt come in" and you can't "just switch" to a different medication...

You get the picture....

So in summary, things have been really tough.

But...good news is that Addy is still Addy. Yes her coordination is not as good as 2 months ago and I get hit in the chest, face, or eye atleast 10 times a day; but she's still here. We have enjoyed times in the home with friends, sunflowers that were planted by loved ones blooming, finally releasing goldfish into our pond, and celebrating many England football matches.

All in all it's a really snapshot of life.