This wasn’t the life we expected. But it is our life — and this is our story.

In February 2018, when Alfie was just three years old, our family received the news that would change everything.

Alfie had Duchenne Muscular Dystrophy.

At the time, we knew very little about Duchenne. Suddenly we were being introduced to a world of hospital appointments, specialists, medications and conversations about the future that no parent ever expects to have.

There was no handbook telling us how we were supposed to deal with it.

So, like most families probably do, we just started putting one foot in front of the other.

In 2019, I started writing.

Duch Dad wasn’t created because I thought I had something particularly profound to say. It certainly wasn’t because I had figured out how to cope.

Quite the opposite.

I needed somewhere to put everything that was going around in my head.

The fear. The anger. The questions. The things I didn’t always know how to say out loud.

Writing became my way of processing it all — and Duch Dad was born.

Learning to live with Duchenne

Slowly, something changed.

Duchenne was still there. The appointments were still there. The worries certainly hadn’t disappeared.

But life was happening around them.

School. Birthdays. Holidays. Football. Family days out. Arguments. Laughter. The normal chaos of being a family.

Somewhere along the way we began learning an important lesson:

Duchenne was part of Alfie’s life. It wasn’t going to be all of it.

When the world closed its doors

2020

Then Covid arrived.

For most families, lockdown was strange and frightening. For families like ours, with a clinically vulnerable child, it brought another level of uncertainty.

We shielded. We stayed home. We attempted homeschooling — with varying degrees of success — and tried to create some kind of normality while the world outside seemed to have stopped and I kept writing.

Our family story changed again

As the children grew older, our understanding of our family changed too.

Mila-Rose is autistic, and over time I’ve found myself learning how differently two children can experience the same world.

Alfie’s needs and Mila-Rose’s needs aren’t the same.

Sometimes they even pull us in completely different directions.

Being their dad has meant learning, adapting, getting things wrong, trying again — and accepting that there isn’t always a perfect answer.

That’s become part of Duch Dad too.

Making memories

Somewhere along this journey, our outlook on life changed.

We can’t control everything Duchenne might bring in the future.

But we can control what we do with today.

So we’ve tried to say yes to experiences, go on adventures, make memories and give Alfie and Mila-Rose stories they’ll hopefully still be telling long after we’ve forgotten how much they cost!

Still finding our way

Eight years on from Alfie’s diagnosis, I wish I could tell you I’ve worked it all out.

I haven’t.

There are still difficult days. There are still appointments we’d rather not attend and conversations we’d rather not have.

There are also holidays, football matches, ridiculous family moments, achievements we’re incredibly proud of and days when Duchenne or autism barely gets a mention.

And I think that’s probably what I’ve learned more than anything.

This isn’t simply a story about Duchenne.

It’s a story about family.

About adapting when life doesn’t follow the route you expected.

About getting things wrong and trying again.

About making memories while you can.

And about being the dad your children need you to be — even when you’re still figuring out exactly what that means.

We’re still finding our way.

I’ll keep writing about it as we do.