Forgive me, for I have sinned. It has been 618 days since my last blog!

Have you missed me? Please say yes!

I’ve had so many blogs whirling around my head for you lovely lot, but I’ve just not been able to find the time to sit down and express myself.

I even had a dabble with posting videos on TikTok for a short while. It seemed like a quicker way of processing my thoughts, yet despite being the only one in the room, it wasn’t something I ever really felt comfortable with!

The first one I did, my voice was shaking, I couldn’t find my best angle and then, when I listened back, I thought I sounded like Chesney from Coronation Street telling my story!

So that didn’t last long.

Anyways, you’ll be pleased to know that I’m not going to document (bore you with!) everything that’s happened over the last 618 days.

But in that time, A LOT HAS HAPPENED.

And for me personally, A LOT HAS CHANGED.

To be honest, I’m not really sure where to begin…

…so I’ll take you back to November 2025 initially.

I’ll be frank and I’ll be honest.

When the Strong One Runs Out of Strong

I HIT BURNOUT, BIG TIME!

Months — in fact, years — of simply trying to keep my head above water had finally caught up with me.

Looking back now, I think I’d spent so long trying to be the strong one, the fixer, the person who kept everyone else happy, that somewhere along the way I’d forgotten to look after myself.

I’d become very good at putting everyone else’s needs before my own. Telling people I was fine. Getting on with things. Dealing with whatever came next because, well, that’s just what you do, isn’t it?

Eventually, I couldn’t.

Everything I’d pushed to one side, everything I’d told myself I’d deal with another day, finally caught up with me and when it did, it hit me like a tonne of bricks.

I’d started a new role at work and I’d more or less been thrown in at the deep end. Usually, I would have just cracked on but this time it felt different, almost like I’d stepped out of my own body and I was standing telling myself to have a minute. I’d preempted where the new role was going and alongside a home life that is a constant cycle of stress/worry, something inevitably had to give so I went to the GP and I was signed off work for a month.

Two weeks into my sick leave life dealt another devastating blow.

Louise’s dad, Brian, sadly passed away suddenly.

I’m not sure there are the right words for that period. I had gone off sick because I’d reached a point where I simply couldn’t keep going. Years of caring, worrying, working and trying to hold everything together had finally caught up with me.

There were other things happening behind closed doors too. Things within our family and home life that had become increasingly difficult to navigate. All I can really say is that life had become complicated in ways that went far beyond work and caring and emotionally I was already running on empty.

Then, two weeks later, we lost Brian.

I don’t want to try and tell Louise’s story of losing her dad, as that is personal to her. Mila-Rose and Alfie had lost their grandad, Louise had lost her dad and we had all lost someone who was a huge part of the family. There was everything that comes with losing somebody, while ordinary life somehow carries on around you.

Then, just a few weeks later, we were grieving again.

Before Christmas, my Nanna — my Mum’s mum and my last surviving grandparent — sadly passed away.

Losing my last grandparent felt different somehow. It was another connection to my childhood gone and after everything that had happened in such a short space of time, another goodbye we weren’t really ready for.

I was incredibly proud to put together my Nanna’s eulogy and to stand up in church and deliver it for her. How do you fit a lifetime of memories into a few minutes? I’m not sure you can.

Two family funerals within the space of a few weeks. All while I was already off work because I’d reached breaking point myself.

Life really wasn’t giving us much time to catch our breath.

I think that was the strangest part of that whole period. Life didn’t stop. There was still a family to look after, appointments to attend, decisions to make and everyday things that needed doing, even when some days just getting through them felt like enough.

Looking back, I don’t think I realised it at the time, but somewhere amongst all of that, something in me had started to change.

Not suddenly. Not dramatically.

But enough for me to begin questioning things I had probably accepted for far too long.

Life Doesn’t Stop for a Fit Note

Being signed off work removed one responsibility from my life, but it didn’t mean I suddenly stopped being a carer. Life also didn’t stop because my GP had written me a fit note.

If anything, during those first few weeks, life became even harder.

A few weeks later, I found myself back at the GP.

By then, I had taken the step of referring myself for counselling. I knew I needed some help trying to make sense of everything that had happened and, perhaps more importantly, how I was feeling about it all. The problem was there was a waiting list of a few months before I would actually get to speak to somebody.

After talking things through with my GP, I was signed off work for another three months.

Seeing three months written down somehow felt different. Until then, I think I had been looking at things in fairly short blocks of time — get through this week, then the next one and hopefully at some point I would feel ready to go back to work.

But those three months gave me something I probably hadn’t allowed myself for a long time: time to think.

When Work No Longer Fits Life

The more I thought about returning to work, the more I started to question whether going back was actually the answer.

It wasn’t necessarily about the job itself. It was about whether being employed by somebody, with all the expectations and responsibilities that naturally come with that, still fitted with the life we now had.

It wasn’t only Alfie who needed us.

Mila-Rose had been through struggles of her own over the previous few years. During the transition between leaving primary school and starting high school, she received an autism diagnosis.

She started at a mainstream high school, but it quickly became clear just how overwhelming that environment was for her. Eventually, we made the incredibly difficult decision to take her out of school.

It wasn’t an easy decision, and certainly not one we took lightly, but continuing to force your child into an environment they simply can’t cope with isn’t healthy for anyone. I mean, we wouldn’t expect an adult to keep turning up to a workplace every day if it was having such a detrimental effect on their wellbeing, so why should we expect that of a child?

Mila-Rose was out of school for around eleven months while Louise went through the long and often frustrating process of applying for an EHCP, so that we could find an educational setting that was better suited to Mila-Rose and her needs.

Eventually, we managed to get her into an SEMH (Social, Emotional and Mental Health) school in Wigan, but even then things couldn’t simply return to ‘normal’. At this point, the most she was managing was 9am until 1pm each day also bearing in mind the travel time is 25 – 40 minutes, four times a day.

So our days were already being shaped around the needs of both of our children.

Caring for Alfie is increasingly unpredictable. There were appointments, illnesses, changes in routine and days when plans could disappear in an instant. Alongside that, Mila-Rose needed support too, and her shortened school day meant that one of us needed to be available early morning and early afternoon.

You could organise your week perfectly on a Sunday evening and by Monday morning none of it mattered.

For years, I had tried to make the two worlds fit together — being an employee and being a carer. I had always believed there must be a way of finding the right balance if I just tried hard enough.

Sitting at home during those weeks, I began to look at it differently.

Maybe the problem wasn’t that I had failed to find the right balance.

Maybe, for our family, that balance simply didn’t exist.

If it didn’t, perhaps instead of constantly trying to make our lives fit around a job, I needed to start thinking about finding a way of working that could fit around our lives.

There was something else happening during this time too.

After those months of waiting, I finally started counselling.

I’d like to say I walked into that first session, poured everything out and walked away feeling like a new man.

Obviously, it doesn’t quite work like that.

What counselling did give me was somewhere to start unpicking everything that had happened — not just over the previous few months, but over the previous few years and there was quite a lot to unpick.

Alfie’s diagnosis. The constant worry that comes with Duchenne. The pressure I’d put on myself to be the strong one. Being a husband, a dad and a carer while trying to hold down a job. Mila-Rose’s struggles. Things happening within our family that I won’t go into here.

Somewhere amongst all of that, probably losing sight of myself a little bit too.

For years, I’d become quite good at dealing with whatever was directly in front of me.

Another appointment? Deal with it.

Another problem? Sort it.

Somebody needs something? Get it done.

Then move on to the next thing.

What I hadn’t really done was stop and process what any of it had actually done to me.

Counselling has helped me begin to do that.

It hasn’t magically fixed everything and I don’t think that’s really the point. Life hasn’t suddenly become less complicated because I’ve talked about it. But it has helped me understand myself a little better, recognise some of the patterns I’d fallen into and, perhaps most importantly, accept that I couldn’t keep carrying on in exactly the same way and expect a different outcome.

Looking back now, I think it was all part of the same process.

Being signed off gave me permission to stop.

Counselling helped me understand why I’d needed to.

Eventually, in May, all of that thinking led me to make one of the biggest decisions I’d made in a long time.

I handed in my notice.

That might not sound particularly dramatic, but for me it was huge.

I’d never not had a job. From the moment I was old enough to work, I’d worked. Having a job, earning a wage and knowing where I was going on a Monday morning had always just been part of who I was.

Now, for the first time in my adult life, I was voluntarily stepping away from that.

There was no new job lined up. No carefully mapped-out career change waiting for me on the other side.

For the first time, I didn’t really know what came next and if I’m honest, that was — and still is — frightening.

There was also a part of me that struggled with the idea of leaving work. I’d always believed that you worked, you provided for your family and you just got on with it. Walking away felt completely at odds with the way I’d lived my life up until that point.

When I looked honestly at the previous few months — and, really, the previous few years — I knew something had to change. In hindsight, I probably should have taken time off when Mila-Rose was out of school but the pressure of being the main earner took over.

This wasn’t a decision I’d made on a bad day. It was the result of finally accepting something I’d probably been fighting against for a long time.

Our family life was unpredictable because it had to be.

Alfie’s needs weren’t going to start fitting conveniently around working hours. Mila-Rose wasn’t suddenly going to need less support because I had somewhere to be. Appointments weren’t going to check my diary first and difficult days weren’t going to give us advance notice.

For years, I’d been trying to make everything fit.

Eventually, I had to accept that it didn’t.

Handing in my notice didn’t suddenly give me a plan for what came next.

If anything, it left me with an even bigger question.

What now?

As it turns out, a few ideas were already beginning to form.

One of them involved a football.

“I’ll Start One Myself Then!”

Football has always been a big part of my life and Alfie loves it. Mila-Rose also did for a while but then Mason Mount lost form! Actually finding somewhere for him to play had proved much harder than I ever thought it would be.

Over the years, we had looked at different accessible and so-called inclusive football sessions. Quite a few were described as ‘pan-disability’, which sounded perfect on paper. The problem was that when we looked a little closer, they never really felt as though they were designed for a child like Alfie.

That isn’t a criticism of the people running them. Most were doing something brilliant and giving children opportunities that perhaps wouldn’t otherwise exist. But ‘pan-disability’ covers an enormous range of needs and abilities, and what is accessible for one child isn’t necessarily accessible for another.

For a child with a progressive muscle-wasting condition like Duchenne, even a session designed for children with disabilities can still be physically beyond them.

Running around a football pitch for an hour simply isn’t an option for Alfie.

That was the frustrating part. He didn’t want football adapted because he didn’t love the game enough.

He needed it adapted because he did.

I’d lost count of the number of times we’d talked about trying to find somewhere suitable. Eventually it became something of a running joke between us.

“If we can’t find one for you, Alfie, I’ll start one myself.”

I probably said it the first few times without giving much thought to what ‘starting one myself’ would actually involve but during those weeks away from work, when I had far too much time to think about what came next, I started wondering Why not?

Why couldn’t there be a football session specifically designed around children with physical disabilities? Somewhere where walking was absolutely fine. Where nobody had to keep up. Where wheelchairs or mobility difficulties weren’t something that had to be accommodated as an afterthought, because they had been considered from the very beginning.

Somewhere where the starting point wasn’t, “How can we include this child in the football session we already have?”

It was, “What would a football session look like if we designed it for this child in the first place?”

Suddenly, that throwaway promise I’d made to Alfie didn’t feel quite so throwaway anymore.

So I decided to do something about it.

I applied to the English Football Association for funding that would allow me to complete the necessary training and qualifications, with the longer-term aim of setting up my own walking football sessions for children with physical disabilities.

I have no grand business plan. No club. No pitch. No team of coaches waiting in the wings.

Just an idea, a promise I’d made to my son and a growing feeling that perhaps the uncertainty I had been struggling with could also point me towards something new.

For the first time in a while, instead of thinking about what I was going to have to give up, I was beginning to think about what I might be able to build.

Football wasn’t the only thing though! My mind then started racing (as it does!) and I began thinking about these sessions becoming just one small branch of a much bigger tree — Action From Alfie CIC.

Our local community has been incredibly kind to us over the years, so I’d love to find a way of giving something back and supporting other families who find themselves in similar situations.

One idea particularly close to my heart is doing something for the siblings of children like Alfie. The Hidden Heroes who perhaps go under the radar a little. The brothers and sisters who understand that their sibling sometimes needs more attention, more appointments, more support and more of Mum and Dad’s time — but who can inevitably feel like they’re missing out themselves sometimes.

I’d love for us to be able to do something just for them too. Whether that’s special experiences, days out or simply opportunities where, for once, they’re the ones at the centre of everything.

I’m not getting too carried away. There’s a long road ahead and at the moment these are exactly that — ideas.

But the ideas keep coming.

Usually at about 3am when I’d much rather my brain just went to sleep!

Somewhere amongst all of this, something else pretty special had started to happen — although, in truth, this one wasn’t really my idea at all.

A Wishlist, a Community and some pretty amazing memories!

Alfie’s Wishlist was born out of the incredible support we received from the Super League Raw community.

What started with people coming together wanting to do something for Alfie grew into something much bigger than we ever expected. The generosity, messages, fundraising and support from people — many of whom had never even met us — gave us an opportunity to start thinking about creating some really special experiences for him and our family.

From that support came the idea of Alfie’s Wishlist.

The idea itself is simple. To give Alfie opportunities to experience as much as possible, to make memories and, most importantly, to let him enjoy being a kid rather than everything always being about Duchenne, hospitals and appointments.

If you’re a follower of Action4Alfie then you’ll be aware that it’s already taken us on some pretty amazing adventures.

Now, I could start telling you about those adventures here…

…but I’m not going to!

For one thing, this blog is already in serious danger of becoming a small novel — although given what I’m about to tell you, perhaps that’s quite appropriate.

Secondly, the story of Alfie’s Wishlist, the Super League Raw community and other incredible people from other organisations who have helped make it possible deserves a blog all of its own.

Now that I’ve finally started writing again, that one is imminent.

Although, given my recent track record with the word ‘imminent’, perhaps don’t start refreshing the website just yet!

Apparently, I’m Writing a Book…

There was something else I kept coming back to during those months too. Something that, without really realising it, I had actually been working on for years.

This blog.

I started writing Duch Dad back in 2019, initially as somewhere to get the thoughts out of my head and onto a page. I certainly didn’t start it thinking that one day it might become a book. At the time, writing was simply a way of processing what was happening to us following Alfie’s diagnosis and, hopefully, letting another dad or another family going through something similar know that they weren’t the only ones feeling the way they did.

Over the years, those posts became a record of our lives.

The diagnosis. The appointments. The good days and the terrible ones. Family holidays. Football. Lockdown. Fundraising. The ridiculous moments that made us laugh when perhaps we shouldn’t have been laughing at all. Plenty of occasions when I sat at a keyboard trying to make sense of something I didn’t really understand myself.

I’d occasionally had people tell me that I should turn the blog into a book.

I’d usually laugh it off.

I’m not an author. I’m just a dad who started writing a blog because life had become a bit complicated but then I started reading some of those old posts again.

Some made me laugh. Some brought back things I’d completely forgotten. Others were much harder to read because I could remember exactly where I was mentally when I wrote them and somewhere amongst all of that, I started to see something I hadn’t really seen before.

There was a story.

Not just Alfie’s story — because that isn’t mine to tell on his behalf — but mine. The story of being a dad navigating my way through a diagnosis and learning to cope . Of trying to keep a family moving forward after somebody tells you that your three-year-old son has a life-limiting condition.

So I started doing something else I’d never imagined myself doing.

I began turning those years of blog posts into a manuscript.

I’m still doing it now and I’d not actually told anyone I was doing it! I think more because then there is no expectation, no pressure and no one asking when is the book coming out! Proper set myself up there haven’t I?!?!?

There are thousands of words to go through, stories to rewrite and plenty that will probably never make it beyond the blog. I’m learning as I go and whether anybody other than my family will ever want to read the finished thing, I genuinely don’t know.

The working title is… THE DAD YOU HAVE TO BE – A father’s story of diagnosis, family and learning to cope.

I hope to self-publish it and perhaps that’s one of the strangest things about where I find myself today.

A period of my life that began with me being signed off work because I wasn’t coping eventually forced me to stop and think about what I actually wanted the next part of my life to look like.

I still don’t have all the answers.

I’m still a carer. Life is still and probably always will be unpredictable. There are still appointments, difficult days and plans that can change without warning. I’m beginning to understand that maybe moving forward doesn’t have to mean finding a way back to the life I had before.

Maybe it just means building a different one.

So that’s where I am. 618 days later, I’m writing again.

Hopefully you won’t have to wait another 618 for the next one!

Kieron