Backing Super Jack

08/05/2026

This is such incredibly welcome news for the Duchenne community 💙

We are so hopeful that this approval will finally mean Jack can access Givinostat through NHS England and benefit from a treatment that could help slow the progression of Duchenne.

Families like ours have waited far too long for opportunities like this. Today feels like a real step forward and gives us renewed hope for the future.

Thank you to everyone who has campaigned tirelessly to make this happen. 💙

On a landmark day for our community, we are delighted to share that the National Institute for Health and Care Excellence (NICE) has recommended givinostat for use on the NHS in England. In final draft guidance issued today, NICE approved the treatment for people with Duchenne muscular dystrophy who are ambulant (able to walk or stand), aged six and older.

After a long and challenging NICE appraisal process that lasted almost two years, and 18 months after the treatment was approved as safe and effective by the Medicines and Healthcare products regulatory agency, this marks a pivotal moment for people with Duchenne.

Today’s news offers real hope for children and young people with Duchenne and their families. It is the culmination of 14 years of work by Duchenne UK, our partners and other organisations, helping to drive advances in research, expand clinical trials and accelerate access to new treatments in the UK.

You can read more about this decision, and what it means, here: duchenneuk.org/givinostat-approved-for-use-in-nhs-england/

15/04/2026

🎉 Jack turned 7! 🎉
On Sunday we celebrated with a family trip to Birmingham’s Utilita Arena to see Hot Wheels Monster Trucks Live, and what a day it was! The roaring engines, the excitement, and Jack’s smile made it truly unforgettable.

Birthdays will always be a little bittersweet for us.
As parents of a child living with Duchenne Muscular Dystrophy, they can be a reminder of how precious time really is. But more than anything, they’re a reason to celebrate even louder, love even deeper, and make as many memories as we can.

Here’s to Jack, to joy, and to every special moment we get to share together 💙

29/03/2026

April is Autism Awareness Month…
and it’s only a few days away.

For some families,
this isn’t just a “month.”

It’s everyday life.

It’s routines that have to be followed.
Meltdowns people don’t understand.
Small wins that mean everything.

It’s patience.
It’s advocacy.
It’s showing up, every single day.

Some days are beautiful.
Some days are hard.

But behind it all
are parents doing everything they can
to support a child the world doesn’t always understand.

So no…
this month isn’t just about awareness.

It’s about being more patient.
More kind.
More understanding.

Because every child deserves to be accepted,
not changed.

©️Parenting On Empty

28/03/2026

This is so accurate, close and unspoken! 🧡💙

👉 No one prepares you for what this becomes as a parent…
Wearing the Weight

This life doesn’t break you in one moment.
It reshapes you, little by little.

Appointments. Assessments. Emails that go unanswered.

Chasing people who hold pieces of your child’s future.

You learn new language — medical terms, funding pathways, eligibility criteria — not because you want to, but because you have to.

Time moves strangely.
Weeks blur into months, months into years… and still, you’re waiting.

Somewhere along the way, you stop being seen as you.
You become “mum the advocate,”
“parent who knows the system,”
“carer who will push.”

And you do push — because if you don’t, who will?
But in that constant pushing, parts of you quietly slip away.

Careers pause. Friendships change.

The life you imagined looks nothing like the one you’re living.

Everything narrows into care.
Into managing a condition that never clocks off.
Into holding it together for everyone else… even when you feel like you’re coming undone.

There’s no switch to turn it off.
No moment where you’re not carrying it.

You fill in the forms.
You tell your child’s story over and over.
You prove, and prove again, what you already live every single day.

And still… support can feel uncertain.
The system counts costs.
Budgets. Thresholds. Criteria.

But it doesn’t count this —
the exhaustion,
the mental load,
the quiet grief,
the strength it takes just to keep going.

Because behind every delay is a child who deserves more time, more life, more ease.
And a parent doing everything in their power to make that happen.

Even on the days you feel invisible.
Even on the days you feel like you have nothing left.
You keep going.
Not because it’s easy.
But because they’re worth everything.

💬 If this feels like your world, you’re not alone.

27/03/2026

It’s been a while since my last update, but there has been a lot going on behind the scenes! Jack has had a busy run of appointments lately, including Neuromuscular, Paediatrics, Wheelchair Services, and Orthotics.
Here is the latest on his journey:

The Neuromuscular Update
We were pleased to see that Jack’s North Star assessment remains fairly stable. Our main focus this time was his fatigue and emotional regulation. While his school has noticed him struggling with tiredness, the medical team currently feels this may be mental overload related to his Autism rather than his physical condition.

We also discussed ankle tightness (especially on his right side) and made a decision regarding his medication. Jack is transitioning from Deflazacort to Vamorolone. It’s a newer steroid specifically for Duchenne Muscular Dystrophy that is designed to be kinder to bone health and growth. We are one week in, and while Jack says the new medicine tastes "gross," we are managing the change!

The Sleep Study
To dig deeper into Jack’s fatigue, we recently had our first overnight sleep study. As any parent of a neurodivergent child knows, the preparation was intense. I packed the weighted blanket, favourite teddies, and did weeks of "social story" prep with photos of the ward.
Jack was incredibly resilient, though we hit a snag with the toe sensor! It took a lot of "hand-batting" and distraction to keep it on, but he eventually settled. The preliminary results showed higher carbon dioxide levels overnight, suggesting Jack isn't reaching deep, restorative sleep. This explains some of the exhaustion he’s been feeling.

Next Steps
We’ve increased Jack’s melatonin to help him settle at night and are currently waiting for the full sleep study report to determine the next steps.

It’s a lot to navigate, but as always, Jack’s strength and adaptability keep us going. I’ll share more once we have the full report! 🧡💙🧡💙

13/10/2025

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09/10/2025

16/09/2025

Join our Board of Trustees and make a difference to over 110,000 people in the UK living with muscle wasting and weakening conditions. 🧡

We are seeking to appoint a Vice Chair with proven leadership experience at Board level within the charity, public or private sector.

We are also seeking passionate and committed individuals to join our Board of Trustees. We would particularly welcome applicants with experience in investment management, clinical experience of neurological conditions, clinical research, human resources, and NHS health and care systems.

Discover more about our Vice Chair vacancy: https://loom.ly/R4vaw_o

Discover more about our Trustees vacancies: https://loom.ly/pW3NF_U

12/09/2025

A Day of Impact and Hope 💙
In 2023, our beautiful boy Jack was diagnosed with Duchenne Muscular Dystrophy—a rare and progressive muscle-wasting condition. While the road ahead is uncertain, we know it will be challenging, and we’ll continue to rely on the support and resources that help families like ours.

Yesterday was truly remarkable and impactful. The incredible efforts of BGC and the amazing celebrities who joined them raised vital funds for charities and brought joy to so many. It gave us hope—for a future with fewer barriers for families facing tough journeys.

September 11th is a day of global remembrance. Honouring those lost by uplifting others is a powerful tribute.

Thank you BGC Charity Day for making this happen.
Thank you Gabby Logan & for your support of MDUK.
And thank you Muscular Dystrophy UK for including us and for all you do for families impacted by muscular dystrophy. Living Things
Anthony Joshua

12/09/2025

DMD Duchenne Awareness
Day 5 – Enlarged Calf Muscles (Pseudohypertrophy)
Sometimes Duchenne hides behind appearances. The calf muscles may look strong and bulky, but it’s not real strength — it’s scar tissue and fat replacing muscle. Like a balloon filled with air, it looks big but isn’t powerful.
The number of times someone said when he was younger "Wow! His muscles look so strong, he"ll make an amazing rugby player" I could have bought him a VIP box at Twickenham 🙈
The truth is, those big calf muscles are a bit of an illusion.

In Duchenne, the muscle tissue gets replaced by fat and scar tissue, making the calves look large — but instead of strength, it actually means weakness. 💙

It’s one of those hidden contradictions of Duchenne: looking strong on the outside, while quietly battling muscle loss on the inside.