Addy's Batten Adventure

Addy's Batten Adventure Addy, being a voice for the voiceless through all the highs, lows & everything in between of Batten Disease, CLN2.

21/06/2026

Thinking of so many for how Father's Day can hit differently...sadly... our hearts are with you. For those whose kids are in their hearts but not their arms.... for the kids that were hoped for but didn't arrive.... for the kids whose Dad's are in their hearts but not their arms... we are sending our love. We see you.

And on this day while missing my own Dad to hug and eat coffee cake and lemon creams with, I also celebrate our Dave Clarke .
With one child you play football. With the other you hold a growing 10 year old as you would a 6 month old. Two different paths each with their own joy and pain but with the same incredible father love. You are the playful one.
The inappropriate one.
The funny one.
The chef.
The BBQ king.
The builder.
The hugger.
The farter.
The pillar.
The get-it-doner.
The think outside the box one.
The get up and do it again one.
The fighter.
We love you and we are so grateful for our life with you. Thank you for all you do to bring laughter, love and stability to our home. We love being Team Clarke with you.

Happy Father's Day Sigma Dad with mad rizz, no cap.

15/06/2026

Social media to U16's in the UK? ... So why do we share Addy's journey?

Since late 2020 we have shared Addy's journey with with horrific disease. The up's, the down's, the challenges, the celebrations, the trials, from each member of the family, and everything in between. But why do we do it?

We don't do it for followers "likes and subscribes", to become famous, or drum up excitement about advertised events.

In the beginning we started to share out of a ferocious fight for awareness. We hoped that this would become a platform for the UK to understand the journey of an ultra-rare disease that robs EVERYTHING from a family; in the hope that when we needed to fight the "people at the top" to allow future diagnosed children the right to live - it was an easy step due to the backing behind us. But what happens now that people have said no?! And not just a "nooooo....but...." what almost feels like a brick wall of hard no's?

We continue to share out of letting friends, family, and other parents of disabled children, (and everyone in between) because the world needs people to share about how we can give dignity and respect to others unlike ourselves through small actions. It's important that people in caring for loved ones don't feel isolated and lonely due to their sacrifice for family members. It remains a way of sharing with friends and family members from afar that want to keep in touch with how Addy is doing but find it a challenge due to timezones, time, technology etc.

And in time when the UK is bringing in restrictions for U16's on social media (which I actually agree with - mostly), we continue to be here not "fighting for attention", but simply informing - hoping that it helps others out there. There may be a times when we ask for actions from those who feel able to, but for the other 98% of the time we hope that Addy's and our story can inspire your's to bring about change in the Adventure you live.

HAPPY 13TH BIRTHDAY TO ADDY'S BROTHER SAMUEL! The fun-loving, resilient beyond words, caring, rubik's cube crazy, creati...
06/06/2026

HAPPY 13TH BIRTHDAY TO ADDY'S BROTHER SAMUEL!

The fun-loving, resilient beyond words, caring, rubik's cube crazy, creative, handsome, joking, floppy haired, croc wearing, flying banana goalkeeper, sport sprinting, fiercely protective, Michael-Jackson dancing, adventure seeking, loving sibling, dog doting, and all-time 24/7 super son. We could not be prouder of the individual you are and person you are turning into. You have overcome more than most, with a smile on your face and a giggle in your heart.

Why not join us in wishing Addy's brother a Happy 13th Birthday.

Ever wondered what a it's like to have disabled child during a heatwave?!!! We'll it's the same but different as having ...
05/06/2026

Ever wondered what a it's like to have disabled child during a heatwave?!!! We'll it's the same but different as having a "normal child". They get hot, grumpy and tired, but....

If you're living in the UK you'll know the recent temperatures, but for those a little further a field, well it's been uncharacteristically warm (AND HUMID) for spring in the UK. With temps of 34°C already everyone has been struggling to keep warm, and it got me wondering how you keep cool? You may take clothing off, splash water in your face, have a drink, move into the shade, get a bath, stand up and find a cooler place in the house.

Now how would you feel if: you wore a tight restrictive scoliosis suit (imagine a wet suit), and incontinence pad, and then some trousers/shorts on. Add a t-shirt, and then sit in a padded or restrictive chair designed for posture not keeping cool. Getting warm yet?
Then imagine wearing hard acrylic, non-breathable plastic leg casts on, with long socks so the casts don't rub. Feeling sweaty? No?
Think about not being able to communicate that you are too warm, or not having the ability to move yourself to a cooler part of the house. And just when you're feeling like a nice icey cool drink would help - you can't because you don't have a safe swallow reflex.
All these things would be hard enough, but add into the equation that overheating can cause underlying stress and seizure activity.

You get the picture....

The dangers for individuals who have the ability to comprehend or verbalise that something isn't right within their environments means that they solely rely on a carer to help them. In Addy's case that is us. Over the past we have tried to do all the same things as other parents may do for their children, but when caring is a fulltime role, temperature management of someone adds in more difficulties than you are able to deal with in addition.

So with climate change continuing to become a larger issue than ever before, and with scientists predicting summer temperatures set to sore beyond recent records, we have had to make the decision to spend a small fortune and have 3 air conditioning units installed in the house; not simply for comfort, but primarily for Addy's safety.

When you become a medical-parent, you suddenly understand that there is a world of unknowns that you simply never had to think about before - *which leads me to announce that we have started to write our story down in a book - available soon-ish*

On another note, if ANYONE else is thinking of having air-con installed with BOXT, let me know, I'll give you a referral code, and we'll box get £100 amazon voucher free 🤣

Sometimes after long school terms, very warm weather, and lots of family times, we all just need some time indulging in ...
01/06/2026

Sometimes after long school terms, very warm weather, and lots of family times, we all just need some time indulging in our own interests. This weekend

Hayley got the pottery wheel our and made some lovely clay creations.

Addy enjoyed a couple of shopping trips, lots of The Lion King in many different formats.

Samuel's broken collarbone is frustrating him so he gamed with his friends online.

And I spent time in the garden, and building a fish pond for Addy.

Many happy heads! 😊

Changing needs, we've all got them.No, I'm not talking about nappy changing, i'm talking about our everyday needs. The t...
30/05/2026

Changing needs, we've all got them.

No, I'm not talking about nappy changing, i'm talking about our everyday needs. The things that keep us being us, what helps us feel safe, what makes us happy - and this past week we've learnt 2 needs.

Addy has always been a "water baby". She was born in a pool (literally a water birth), she loved paddling pools, even last year she had a fantastic pool party, but something has changed. Over the past 8-10 months we've noticed a shift. As her eyesight has diminished and her dystonia has increased, she likes to feel more grounded physically. I.e. in order for her to feel safe, relaxed, and therefore in control of her flailing limbs, her NEEDS are that her feet need something under them, her hands holding/resting upon something, and a downward pressure upon her. It's not a preference, it's a genuine sensory need - and so therefore open water has become an unsafe place. When she can't recognise what is happening through sight, her other sences are heightened, and they tell her open water isn't a strong enough pressure upon her to feel safe. It was a kinda sad moment until I caught myself saying things like; "I need to: go for a run, have some space, get a drink, take a shower." And so if I can express those needs within me, why would I push my daughter into something that would cause distress for her.

And so a few days later I attempted another activity Addy used to always love...shopping at Tesco! The sights, sounds, smells, the holding onto the shopping trolley, placing things inside the trolley and then onto the checkout, before choosing a charity to put her token into. It's all activity which she used to love.....AND STILL DOES!

We had such a blast, giggling as she went, randomly calling people "baby" and pointing at them before laughing 😅, and just enjoying the cool air conditioning in the shop was as refreshing as the experience.
Lastly before we went home whilst Addy was using her token to vote for a charity donation, another young girl (possible 6-8yrs old) came up to me and said, "Would your daughter like my token as well?"
Astonished, I turned to her and said, "Oh it's OK, you use it."
No sooner as I finished, the girls mother turned to me and said, "No, Elsa would REALLY love your daughter to have it." 🥰

It was so touching that I introduced Addy to Elsa and she gladly used the voting token.

It's moments such as these at the shops that makes Addy's changing needs easier to cope with. The kindness and compassion of a stranger or the moments of simple joy amongst the mundane that make you realise we ALL have needs that change, and it's OK to embrace them.

Well its been 3 weeks since we last shared our story about carer burnout, and let's just say it's a slow journey to reco...
21/05/2026

Well its been 3 weeks since we last shared our story about carer burnout, and let's just say it's a slow journey to recovery. Just like in the story of the tortoise and the hare, there is no quick solution to restoration when the mind is hurt, but it's largely consisted of eating and sleeping during the days.

Addy's sleep on the otherhand has once again deteriorated to 2.30am wake up's, and so as parent care givers often need to rest when the kids are at school to recuperate. Today however was no such thing as rest.

2 kids, 2 hospitals, 2 towns, 2 parents.

Whilst Addy was receiving her regular fortnightly treatment in Bristol, we picked up the phone from Samuel's school to say we needed to attend as he had been involved in an accident and the ambulance was on its way.

As I raced to the school (still unshowered, unshaven, and stinky breath that could match a bears), I thought about what could have happened. Racing into reception, I could see him sobbing and clearly in shock holding his shoulder.

Whisking him off to the hospital I could remember all my first ask training but little could be understood through the grimacing. A few hours later and xrays confirmed he has a 90% break to his his collarbone and conversations with orthopaedic consultants need to be had next week.

And Addy???? Well she's doing ok. At each treatment the nurses draw out a small amount of CSF (Cerebral Spinal Fluid) to check in her health and despite an unusually high level of red blood cells in her sample (which is believed to have been an anomaly) she is doing hunky dory.

Being a parent is the same whether your children has disabilities or not, recovery sometimes just needs to wait.

02/05/2026

VOLUME UP ⬆️
Sit back 🪑
And feel free to smile 😊

I mean how else could you not smile along with this girlie!

One of the things Addy does get enjoyment from is the screen like everyone else. And I mean who doesn't like a the illiterate scout leading dog, Hey Duggee!? Despite not knowing how much, we are just so glad that at this moment in time she is still able to make out some of the screen.

It's been a while since we last posted, almost 3 weeks infact. Not because we haven't had lots to update you on, but it'...
30/04/2026

It's been a while since we last posted, almost 3 weeks infact. Not because we haven't had lots to update you on, but it's simply been too hard to write on numerous levels.

Whilst there were smiles on the photos of Addy's birthday, it was actually one of those moments that will feel like a critical point on the regression timeline.

For years, all Addy talks about is cake. Cat cake, lion cakes, Disney Frozen cakes, dog cakes, cakes cakes cakes. Hayley even made her a laminated book of all her past birthday cakes! What Addy is doing by talking about cakes is she is telling you what kind of birthday cake she wants next! But this year things were different. Despite talking to Addy everyday for a week that her birthday was approaching, when we presented her birthday cake to her we expected a gasp and giant smiles, but nothing....
It wasn't what she did that shook me, but rather what she didn't do. She didn't gasp, she didn't smile, there were no giggles of excitement or trying to pull it closer; just a blank look. Almost a look of utter bewilderment and confusion. Over the years we have noticed that unless events are repeated almost daily, Addy's recognition of the situation has become more distant in her memory and therefore less significant to her. In this moment, it was is she had forgotten what a birthday was. Is was a lack of understanding of what the implications were.

The rest of the day almost seemed like an event that we did for ourselves and Samuel. Like we went through the motions because we wanted to mark the occassion about her, rather than something she really cared about. We opened the presents with her...or more often FOR her. The reality is, there are fewer and fewer things she truly enjoys.

Since then we've been under greater and greater stress. More than we have ever been under and as a result are psychologically exhausted - or atleast that's what the Dr has labelled it when I visited him. It's like we'd have the impetus to do something, and when you get up the biggest wave of "Noooooo, I don't want to...I want to curl up in a dark room" kinda feeling floods my head. It hurts inwardly, it causes the drive within you to stop.

This week I've been so glad for a slower week and have had to "choose to only do the necessary" because otherwise it's too overwhelming.

The unrelenting stress of a parent carer is real, and psychological exhaustion cripples.

TODAY I TURNED DOUBLE DIGITS! HAPPY 10TH BIRTHDAY ADDY! There were many lovely thoughts about today, many really tough o...
10/04/2026

TODAY I TURNED DOUBLE DIGITS!

HAPPY 10TH BIRTHDAY ADDY!

There were many lovely thoughts about today, many really tough ones, but for now its all about celebrating this gorgeous girl. We could NOT be prouder of who you are and the love you share with people!

You light up every room with you your RAR'S and laughter, kisses and cuddling, and you are the world to us.

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