Dylan's Duchenne Journey

18/07/2025

Sheffield today.

Bloods ✔️
Results whenever they come back, if anything bad I'll get a call.

Physio assessment ✔️
He's a lot slower and weaker just in 6 months. They have strongly recommended more wheelchair usage. They have also recommended that when he goes to secondary school in September that wheelchair usage should be for the full school day. He will do whichever way he pleases either way but this is disheartening news. But, I cant say I didn't see it coming.

Mental health ✔️
I confirmed he has a kids psych assessment after our Tokyo trip due to the level of panic attacks he's having, the difficulty in expressing his emotions and his emotional outbursts. We will be requesting an autism referral because it's becoming quite obvious, he is just like me, his mother, in that regard. Spoke about antidepressants briefly but that will be avoided unless absolutely necessary.

Confirming upcoming appointments ✔️
This includes his yearly vision test, dexa scan with metabolics/endocrinology, dentist trip (that one will be interesting), paediatrics but hopefully not with grimsby and more blood tests. We have a new emergency care plan and more emergency drugs ordered ready for home and Tokyo.

Future stuff ✔️
We've been offered to swap from prednisolone to the new drug vamorolone. NICE approved this in the UK but they need each trust to accept. Sheffield Children's NHS Foundation Trust approved and it's now available. I have politely declined but thanked them for the opportunity.

His disease is progressing and I'm absolutely terrified. I promised my mum I would stay strong, so that's exactly what I am doing.

Much love everyone, I may log off for a little while 💕

16/07/2025

This boy never ceases to amaze me. He went to PGL!! I wasn't sure if he'd struggle with the activities or if he'd be stopped doing any due to his disability and illness. But this amazing kid just told me he did abseiling, zip lining, archery, raft building... the list goes on. He was even jumping in the water and he famously will not do that.

Absolutely nothing stands in his way, stupidly proud!!!

10/07/2025

This mum is mentally not doing good in anyway, I need to take a break away from social media and will be temporarily deactivating my personal facebook so I can find some peace and hopefully quiet, unfortunately this account is tied to my personal account. I'll be back when I feel able.

Dylan is okay, we have Sheffield next week to get him checked a bit sooner than usual. I will update when I come back.

Thank you.

25/06/2025

This is a very vulnerable post this evening, but I'm here to raise awareness so here we go.

It's been extraordinarily hard without my mum, without Dylan's grandma and best friend. There's not been much in the way of emotion on my part. It's not shock, I just don't want to admit that there's a world without my mum yet.

Unfortunately Dylan's health has nosedived slightly and he's struggling. I'm struggling because he is. We have new symptoms and he's had his heart scan this afternoon in which we haven't got results of yet, he said normal but we'll wait for the full report and comparison from the last one. He had his last echo December 2023 right after he was diagnosed. It is supposed to be yearly. He is 18 months late because in true local hospital fashion, nobody wanted to make the appointment. Which is all good and well if my son didn't have DMD.

His mobility has vastly worsened. He has put an astonishing amount of weight on since his increased steroid dosage. He is now suffering from bad mental health.

A referral to children's mental health services has been made today. I've never seen him cry like he did after his scan. Nothing has hurt me more than seeing his physical changes and now his mental health.

I'd give my own life to fix you, Dylan. We are all so proud of you and I am proud of your bravery, resilience... I'm so sorry my boy

19/05/2025

Myself, Dylan and my family would like to give a massive thank you to Prestige Auction's Grimsby House Clearance Specialist for auctioning his tattoo name card, I cannot believe how much it went for!!

From the bottom of our hearts, THANK YOU❤️❤️❤️

12/05/2025

We have some incredibly sad news to announce to you all.

On Saturday 10th May, Dylan lost his best friend, his grandma. It was a short and incredibly tough battle, at 3:35am she closed her eyes one final time, peacefully and gracefully.

Dylan & his grandma were always a force to be reckoned with. When Dylan was diagnosed it hit her even harder than it hit me, in fact it was the one thing in her whole life that broke her beyond any sort of repair. If there is one thing that I can say about all of this, she isn't in any pain with the illness that took her away from us now, but more than that she doesn't have to carry this hurt of Dylans medical diagnosis anymore and that selfishly brings us peace.

Dylan has taken this incredibly. Given his mobility and own problems... he's been making me cups of teas, cuddling me more, he made me dinner at grandma and papas house yesterday and won't leave my side. We've all been thinking about which items of mums we would like that would be sentimental to us... Dylan chose grandma's pillow from her bed. They slept together so much during their sleepovers. He said it smells like her. What could be more sentimental?

In Dylan's words today... "death is part of life mum, but I'll miss her so much it's hurting me".

My clever, mature and brave boy. Nobody compares to your grandma, and you know it ❤️

16/04/2025

16/04/2025

We’re doing everything we can to prolong the life of our 16-year-old son, who is living with DMD. Every day is a fight, emotionally and financially, to access care, treatments, and support that might give him more time, more comfort, more life.
Meanwhile, we read that our government quietly spends nearly £100,000 flying a an asylum seeking s*x offender from a secretive military base for emergency surgery overseas—only to return him back to detention. All at taxpayers expense!
The individual reportedly tried to take his own life on the Chagos Islands after he was refused asylum in Britain - he lost a High Court appeal against the decision by Home Secretary Yvette Cooper. In the meantime children like Joshua are fighting to live!

That kind of money could fund critical care or medical trials for families like ours. It could buy time for our son. It could give hope.
This isn't about one life being worth more than another. It's about priorities. Transparency. Fairness. It's about asking: where is the urgency, compassion, and investment when it comes to helping our children right here at home?

13/04/2025

My boy has been taking names and kicking butts today! Thank you to Yardbirds and all staff for another cracking market day full of raising pennies for this angel. Thank you to the customers who gave him tips for his cracking burger making skills, you'll never understand how happy this has made him.

A very, VERY big thank you to the love of my life, Jack, for getting waxed and raising more pennies, feel better soon 😘

I love you all so much there's too many to name, but you're all always in my heart, family❤️

Support your local Warlocks 💛 ❤️

28/03/2025

My boy 🖤

21/03/2025

This boy. What a perfect little boy ❤️