Addy's Batten Adventure

02/10/2026

This week was THE worst milestone... 30th Sept 2020; it's been 6 years since Addy was diagnosed. The depth of pain you feel when in those moments of shock when you hear the words "terminal disease" will haunt me forever.
The memories of professionals nodding in silent sadness when you ask the question "will my daughter die early", still bring me to tears even today.
The cocktail of emotions as disbelief and anguish collide, tearing apart of your soul as you walk back into the house and see your newly terminally diagnosed child playing like nothing is wrong; and you break down on your sister-in-laws shoulder as you struggle to breathe through tear soaked words the phrase "I'm going to have to bury my own daughter."

There has been NO greater pain than that I felt that day. Sadly, the only date that came remotely close was a few years later when we made the decision to inform Samuel that his only sibling would pass away before adulthood.

They say time is a healer, and I know what it is supposed to imply, but it does take a LONG time. For the few years post diagnosis, everything in time was framed "Before Diagnosis" (BD) and "After Diagnosis" (AD) - nothing else. It sounds weird but you didn't live in the present, you planned for the future - knowing it may never happen.

As 2yrs AD turned to 3, turned to 4, 5 and now 6, it is only now we look back and think of Addy in the "Now". Reminiscing of a BD child is almost like remembering a different child, a forgotten time, when we used to have a child who was capable of conquering a playground, scaling a climbing frame, or feeding themselves. We have moments when we still grieve that child, but we celebrate the child we have today. Life has (and continues to) have some utterly horrific moments, but we somehow try to find the contentment in her love of life now. It's not the same, but it's simpler and lovely in its own way.

In a month when we have grieved the loss of another 2 beautiful girls passing away with Batten Disease, we are under no illusion of the journey that is before us in time; when the grief of diagnosis day will be surpassed by another, but day is not today, and so we shall chose to live in this moment of life.

25/09/2026

Read this if you are accessing U18's children's social care in the UK!

Mind the gap and know your limits - because it's more shocking than you realise.

Over the past 3 weeks, I've been really trying to process something incredibly emotionally stressfull...

Since Addy's diagnosis in 2020, and because of the life-limiting prognosis of Batten Disease she carries, we have always been assigned a social worker. We have accessed many different types of support; from direct payment workers, and more recently agency carers, however we have always maintained that one of Addy's difficulties that has a direct consequence to us and our ability to support her is that she struggles to sleep through the night. This means on any given night, she may only sleep 4-6 hours - and us even less.

Throughout our time as Addy's needs have increased, her social care support package has also risen in line with her regression up until Jan 2026, were we had 30hrs of care support available per week through our local authority. 22 of these hours have been agreed to be used on night care (carers to sit awake with Addy throughout the night that allows us to sleep), and the remaining 8hrs are used throughout the week to get Addy ready for school each morning. Basically for 104 nights per year, out of the 365, we were guaranteed sleep! Game changer!...but it provides very little support elsewhere. On top of this, Addy has been deemed as REQUIRING 2-1 care for moving, changing, feeding, aka all of her needs.

Now here's the 1st kicker! And what was NOT explained to us until Sept 2026.

Addy is under a social care budget, and is on the highest deemable rate - but we would argue she needs more support due to the needs of the rest of the family, sleep, after achool carering etc. when one of us isn't around/ill, or simply sleeping because they didn't the night before.

After stating this recently in September's monthly MDT (Multi-disciplinary Team) meeting with her proffessional team we were informed that...
We CANNOT have any additional night care because once we tip over a 74 night threshold then Addy would need to become a "LAC" child.

A "LAC" (Looked After Child) Child is a referring to an individual U18 who is still legally a child of their parents, however the local authority takes responsibility for all the child's care. YES you read that right. The local authority would take the parents to a Family Court, and the judge would deem what was best for the child. The judge would decide where the child resides, schools they attend, hospital treatments - you name it, it happens; and in Addy's case the responsibility would be given to our local authority! So theoretically, Addy could be taken off us, placed into a children's home, where she doesn't have 2-1 care, and taken off her life prolonging treatment.

And why? Because 74 nights is deemed the tipping point to when it because "financially more effective to look after her" than in the home. Money....its comes down to finances. It's not better for her, mentally, physically, emotionally, or socially - it's financially more viable.

The question is, Why were we not made aware of the 74 night threshold, when only 6 months prior it had been agreed that 2 nights per week would be given aka...104. Therefore to date, we have used 64 nights and now only have 10 left until Jan '27. 😩

And here's the 2nd kicker....
The only way for us to get additional support for Addy that wouldn't require her becoming a LAC Child, is that she would require a CHC (Countinual Health Care) budget - however after assessments, we've been told she doesn't reach the criteria because, "Addy isn't ill enough".

Essentially, Addy falls between the gaps of being too complex and needing too much that social care budgets don't support her adequately, and not being physically ill enough to reach the CHC criteria.

And the FINAL KICKER!!!!
The question is asked of you by the local authority...

"So can you cope? Do you have enough support?"

Knowing that if you say no, you face the potential worst of having your child taken off you - so you have to respond yes despite the feeling of drowning yourself.

And so because we would sooner put ourselves into an early rave before Addy is taken off us through a court, we are deemed as "having enough support" to adequately manage.

The gap is too wide, the limits are broken, and the realities are shocking. These are our cries.

09/09/2026

Parents with girls due to go through puberty need to know this! ⏬️

DISCLAIMER: Please note, this is not a rant, but an information narrative to help others in a similar situation make informed decisions.

NOTE: We have turned comments off for this particular post due to some abusive comments towards us. We are simply here to help share our experience. If you would like to share something positive - please message directly, or feel free to share to anyone with whom may find it helpful.

For 10 years we have known we had a girl.
For 10 years, we knew she would go through puberty.
Almost 6 years ago Addy was diagnosed with Batten Disease, a complex disease.
3 years ago I got freaked out (as a dad particularly) because it suddenly dawned on me, my daughter was incontinent, in nappies, and at some point she may start menstruation - and I would have to deal with it.
So a little over 2 years ago I nervously plucked up the courage to start asking awkward questions...

👧 What happens when girls go through puberty and menstruation?
👧 Metaphorically, what does it look like for an individual who is physically a teenager, but mentally only 15 months old?
👧 For hygiene reasons, do you trim body hair? Especially down below?
👧 Will hormones spark more seizures?
👧 Can we save her from this pain, cramps, bleeding as she's not going to be having children; and despite us telling her, she will have NO clue what is happening or ability to comprehend it.

The more people I asked, the more pointing fingers we receieved back, referrals to "someone else", or "maybe this person could help", or "have you tried googling it" and my personal favourite "just let it happen and see." Consultants, forums, teachers, social workers, nobody even had a simply pamphlet they could give me. And I mean NOBODY! Considering half of the world's population goes through this, and we have a LOT of complex needs childen in the UK, it is astonishing I couldn't find anybody could help me.

But I'm a person who needs answers. I'm a person who wants to try atleast be a little prepared, especially when it is SO alien to me. After a while we were told by a paediatric consultant, "Addy will have to go through her first period, and then we can discuss options."

BUT THAT'S NOT TRUE!!!! THERE ARE OTHER OPTIONS BEFORE THIS!!!

Especially for an individual who has a life-limiting disease, who is never going to have children, who isn't maternal, and who already goes through enough pain already - you DON'T have to wait until a first period before discussing options out there!

OH HOW WE WISHED SOMEONE WOULD HAVE TOLD US THIS 🔥🔥🔥

After an Endocrine appointment today (that took an age to get to), we were asked why hadn't we come sooner? and whether we would consider "Puberty Blockers", or treatment to "Stop her periods", but warned us that it might be too late because Addy has already started puberty.

THE VERY THING we had been constantly asking care teams about over 2 years ago.

The very thing we had been wanting to get clued up about to make informed decisions, to potentially stop, but nobody knew about.

The very thing we were passed from person to person regarding - and were told you have to wait after a girl's first menstruation cycle - is wrong 🤯

So here it is. If you have:
👧 A complex needs child who is female,
👩 Who is unlikely to reach adulthood,
😢 You want to spare them the pain of puberty, menstruation, and possible seizures (yes there can be other side affects).
..there are options out there that you can ask about BEFORE it starts happening. Speak with your Endocrine team and allow yourself to make an informed decision.

P.s. As a dad I NEVER thought I'd need to be so clued up about this, or even heard about the word "Endocrine" before this journey...😅

Be bold, ask awkward questions, and share help.

05/09/2026

Summer holidays were LONG, a blast, stressful, adventurous, and seizures all mixed into one. Lovely to have the kiddos back to school.

Addy's school operates and organises their classes on a needs basis, however she is now at an age equivalent to yr6. 🥰

To those parents who's children won't return to school this term, we are thinking of you.

Here's a few snapshots of the 6 weeks rolled into one...PHEW 😵‍💫

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.