Dylan's Duchenne Journey

Dylan's Duchenne Journey Follow Dylan on his Duchenne Muscular Dystrophy journey and to raise awareness. Defy the odds 💙⚔️

A fresh cut always feels good ❤️
15/09/2025

A fresh cut always feels good ❤️

19/08/2025

Just an update regarding Dylan.

Dylan was obviously in his wheelchair a lot more in Japan, and when he did walk it wasn't for long. I have decided that it's time to take action at home. While he builds a big "catio" outside for my beautiful girlies, I will be renovating inside. Unfortunately we've had to make the decision to bring Dylan's bedroom downstairs as it's becoming dangerous and with only downstairs bathroom/toilet it's safer. Recarpeting the whole house. My living room will be Dylan's bedroom, my dining room will be my living room, Dylan's old/upstairs bedroom will be my bedroom and my old bedroom will be a storage room. I've never had storage here, very limited space and no outdoor shed so that room will come in handy.

We are still on the council house list and still not any sort of decent priority despite how many medical letters they have received. We are still being offered 2 bed flats that are not accessible, some ground floor, some top floor. I wish they'd understand that British people are entitled to family homes. Flats aren't a bother but I'm 33 years old and would like my forever home with a garden, driveway and garage in a nicer area for Dylan.

Many will offer help, of which I'm humbled and grateful, but there's a plan in place with my boyfriend, dad and close friends to make this renovation smoother, too many cooks spoil the broth so we'll be sticking to military regime with this because it has to be perfect ❤️

I'm a little out of sorts with this so bear with me, I'll be back to posting soon, I'm still grieving also and requiring a lot of space ❤️

Tokyo ❤️My boy has had the best dream holiday you could imagine. Here's a compilation! He was in his wheelchair at least...
19/08/2025

Tokyo ❤️

My boy has had the best dream holiday you could imagine. Here's a compilation! He was in his wheelchair at least 98% of the time but I'll show you the rare times he stood and walked.

Thank you Yardbirds Rock, Deadly Bakes, Sallyann Newborn, Sarah, Burton, all donaters of the gofundme and cash donation for making this happen through raising money for him, I could never afford Tokyo without this. The biggest thank you to the best man I've ever met Jack, for everything ❤️ if I have forgotten anyone, huge apologies but big big thanks it's been a big year for us!!

We arrived back last Thursday and only just finding our feet again. 12 hours there, 15 hours back alongside a little bit of jetlag ❤️

Day 2 - Teamlabs borderless was absolutely unbelievable. I've never seen Dylan so excited, and he walked most of the way...
08/08/2025

Day 2 -

Teamlabs borderless was absolutely unbelievable. I've never seen Dylan so excited, and he walked most of the way round!! Tokyo tower was pretty cool until vertigo washed over everyone 😂😂😂

Beautiful start to our holiday ❤️

Flight & day 1 in TokyoThat flight was really really hard and I'm hoping to be more prepared for the way back! It topped...
07/08/2025

Flight & day 1 in Tokyo

That flight was really really hard and I'm hoping to be more prepared for the way back!

It topped at 35 degrees and 58% humidity today so needless to say we've struggled 😂😂🥵

We're leaving on a jet plane, dont know when I'll be back again 🛩
05/08/2025

We're leaving on a jet plane, dont know when I'll be back again 🛩

25/07/2025

I've never felt so sad. We're all so proud of you dude, your grandma will be beaming watching you on your last day ❤️

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 💕

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 sto...
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❤️❤️❤️

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