Lucas’s Journey

24/01/2026

Today feels like a moment worth pausing for.

The Government has formally committed to commissioning a national review into the mental health impact on families when a child is terminally ill or has a life-limiting condition — something that has never been systematically reviewed before in the UK.

For families living with Duchenne muscular dystrophy, this matters deeply.

Duchenne doesn’t just affect the child — it reshapes an entire family’s life, future, and mental wellbeing from the moment of diagnosis.

For too long, families like ours have been left to cope alone.
The shock.
The fear.
The endless appointments.
The advocacy.
The anticipatory grief.
The exhaustion that never really lifts.

Parents are expected to function, fight, care and survive — often while carrying trauma that goes unseen and unsupported.

Today, that broken system has finally been acknowledged.

This isn’t the end.
But it is a turning point.
For Duchenne families.
For Hugh.
For all parents who deserve better. 🧡

Who is Hugh?
Hugh was a child with a life-limiting condition. His family experienced the immense emotional and psychological impact of caring for a seriously ill child, and the lack of mental health support available to parents and families.

By sharing their lived experience, Hugh’s family helped highlight a gap that has existed for far too long — that while children’s medical needs are prioritised, parents’ mental wellbeing is often overlooked.

“Hugh’s report” is named in his honour and represents the voices of thousands of families living with life-limiting conditions. It is a step towards recognition, accountability, and better mental health support for families who deserve far more.

Amendment 90
https://bills.parliament.uk/bills/3909/stages/20215/amendments/10026711?fbclid=IwdGRjcAPgnTdjbGNrA-CdLmV4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHtMPzYL4jaj2NGtBfIfYi2ivozaA7gFnk9lR9HKUnUueT4GijnukLy5GOKvF_aem_EJmX1SgiiW6NxbG_AavhZg

24/01/2026

When Running Stops and Walking Changes – A Duchenne Mum’s Perspective

One day, the running stops.
Then the jumping.
Then the simple act of keeping up with friends.

From the outside, these can look like small physical changes. A slower pace. A few more pauses. A different way of moving. But on the inside — for our children and for us — each loss feels enormous.

When walking begins to change, the world starts to shrink. Distances become shorter. Falls happen more often, and they become more frightening each time. For my son, Joshua, those falls are changing too — his muscles no longer respond quickly enough and he has always struggled to put his hands out to protect himself. A moment that once ended in laughter can now end in fear.
Confidence wobbles alongside balance. And quietly, grief moves in.

This stage carries a heavy weight.

It’s the mourning of what once was, while trying to find the strength to face what comes next.

Living with Duchenne means loss often arrives in stages. There isn’t always a clear “before” and “after.” Instead, it’s a gradual slowing down — a heartbreak that unfolds in slow motion.

First, the running changes.
Then the jumping disappears.
Then the gap between our children and their peers widens, one step at a time.

When walking becomes less predictable, safety starts to take centre stage. Not because we want to limit our children — but because we want to protect them while they continue to live their lives.
For us, this stage has meant thinking differently.
Watching more closely.
Anticipating risks we never used to think about.

Adaptations can look like: • Choosing safer routes and environments
• Slowing the pace without taking away independence
• Using mobility aids earlier than expected
• Making small changes at home to reduce risk
• Learning when support helps — and when space still matters

These decisions are rarely straightforward. They come with mixed emotions: grief, relief, guilt, and love — all at once.

Support matters here. From physios who truly understand Duchenne. From schools that listen. From professionals who take concerns seriously. And from communities who don’t question why adjustments are needed.

Most importantly, our children need reassurance — not that nothing is changing, but that they are not facing those changes alone.

Safety doesn’t mean wrapping them in cotton wool.
Adaptation doesn’t mean giving up.
Support doesn’t mean weakness.
It means meeting our children exactly where they are, and walking alongside them — even when the path feels uncertain.

Each of these losses might look small to the world, but they are huge inside our homes and our hearts. When walking becomes harder and falls increase, it’s not just a physical challenge — it’s a period of deep, ongoing grief.

As a parent, you grieve while still cheering them on.
You mourn, while reassuring them.
You watch more closely, hover a little nearer, and carry a quiet fear you never had before.

If you are in this stage right now, please know this:
Your grief is valid.
Your child’s frustration is real.
And you are not alone in the shadows of these “small” losses.
We see them.
We feel them.
And we carry on — together.
💙

23/11/2025

So true

Parenting a Child Who Is Both Neurodivergent and Has Duchenne

Parenting is never simple—but when your child is both neurodivergent and living with Duchenne, the weight you carry becomes something most people can’t even imagine.

Self-care becomes a mythical creature. Everyone tells you to “look after yourself,” but how do you do that when the minute you sit down, someone needs you? When calm moments only exist in theory? When the world around you keeps moving, but yours is built around medication schedules, mobility support, emotional dysregulation, sensory overwhelm, and constant vigilance?

And the practical side… it’s heavy.

If you’re part of a couple, there’s the unspoken tug-of-war of who becomes the “default parent.” Duchenne often requires physical support that one partner may naturally take on more of. Neurodivergence often requires emotional patience that one partner may absorb more of. Suddenly one of you becomes the practical carer, the other the emotional anchor—both roles exhausting in different ways. And sometimes it feels like your child leans on one of you more, leaving the other running on fumes, unseen.

But if you’re a sole parent, the truth cuts even deeper:
There is no swapping out.
No tag-ins.
No backup.
No “you rest, I’ve got this.”
You are the night shift, the day shift, the crisis negotiator, the medical team, the emotional support human, the project manager, and the safety net all at once.

And still, you get up every single day and do it again.

Because here is the part no one tells you:

Parents like us carry invisible weight—weight that never reduces, never resets, never gets shared proportionally. It’s like holding up a mountain with your bare hands while still cooking dinner, managing meltdowns, attending appointments, and comforting fears.

But we keep holding it anyway.

Not because we’re superhuman.

Not because we’re stronger.

But because our children need us—and love fuels a stamina no textbook, no doctor, and no bystander will ever understand.

To every parent carrying infinite weight, to every couple trying to balance the impossible, to every solo parent holding the whole world together with no backup—
You are seen.
You are extraordinary.
And you are doing enough, even on the days that break you.

31/05/2024

Sorry We haven’t been on here for a while since setting up Lucas’s Journey, we have had so many appointments over the last few months.
A lot of things have changed for Lucas he don’t walk anymore 😢😭 yes it’s hard for him but he’s doing okay as can be, as a family we have always been truthful with Lucas about his Duchenne to get him ready for when things do change as everything is happening way to fast for him He’s only 8 years old 😞😢
We now have his specialist bed and hoist he’s over the moon with them both bless him
Things will be much better and settled when we are moved in the next few months 🤞🤞

04/02/2023

Hey everyone I’m setting this Journey up for Lucas so I can keep you all posted on what’s going on with Lucas, back in 2021 he was diagnosed with Duchenne muscular dystrophy, we as a family was very devastated and upset their is no cure for this horrible disease 💔 Lucas is on long term steroids also other medication.
I will give some more information on Duchenne muscular dystrophy as it’s a rare disease and not many people no about it so I will be posting some stuff in the next few days, please give Lucas’s journey a like/ follow many thanks 😊 x