Dylan's Duchenne Journey

20/02/2026

We lost a very brave man yesterday. This man was the majority of my 20's during which I placed him on a pedestal, on that pedestal he always remained. Greys Anatomy was everything for me and to me.

This amazing man went public with his Amyotrophic Lateral Sclerosis (ALS) diagnosis 10th April 2025, his first symptom being around 18 months prior, dying only 10 months later.

It broke my heart when he was diagnosed, not because he was a complete heart throb, but because he was a wonderful man, a fantastic actor and somebody who grasped his illness and turned it into humour, turned his life into that of only family and loved. He used his diagnosis to become a voice of awareness of ALS. He used his diagnosis to do good in this cruel world.

I will never forget telling my mum on that day and her having a cry, we were at work. Unknowingly dying at the time, she died only 4 weeks and 2 days later. I hope you get to meet him mum, please tell him thank you.

The biggest reason for posting this, is because this man's voice during this period of his cruel disease helped millions... he helped me to understand Dylan's disease, how to make memories and take every moment you can. He helped me to cope knowing I will have to go without some day, but it's what we have here and now. He helped me to survive some hard moments.

Thank you for everything, Eric. Thank you for being the gorgeous and cheeky McSteamy. Thank you for being open and honest. Thank you for helping all of us. Your legacy lives on through all of us - through those suffering with ALS and other rare diseases and their families.

May you rest in peace, sweet man, we had a blast didn't we?

15/02/2026

There is something massively wrong with the system and awareness needs to be raised.

"Busican muscular deficiency"? They can't be for real?

I didn't have any needles to administer his IM hydrocortisone which is no fault of my own ... but, despite the fact I said adrenal crisis they still sent me to a primary care giver. Yes I should have taken him to a&e immediately, and lesson learned, but I was absolutely frantic and losing my mind thinking my boy was dying. If I wasn't an expert in my child's disease then the NHS would have quite easily been to blame for anything bad that happened. The advice they gave was absolutely dire.

I'm looking into finding way to raise more awareness. I don't know how. I need the NHS to know more about our DMD warriors.

14/02/2026

Dylan was absolutely perfect after his infusion, except for this morning when he woke up. I had my alarm set for 10am so we could have a lie in, I'm woken to Dylan calling me screaming his head is really hurting. I went into him, got his morning meds, emergency meds and post infusion meds ready. He had his tablets and one bite of a banana and immediately started vomiting everywhere. Now I have a boy with a severe headache, nausea, vomiting and a temperature... not unresponsive luckily but certainly headed that way.

Needless to say, we've spent the entire day waiting on call backs from 111 and in the hospital.

Dylan had his first adrenal crisis today. That's the scariest thing I've ever been through.

Home time, all well.

13/02/2026

It's been a very long day, left for Sheffield at 6am and only just got home at 4pm.

His kidney function bloods were normal. Infusion went smoothly, opted for numbing cream as he's never had a cannula and we all know how sore they get. Have a bonus tired mummy photo and the girly pop elevator.

I'm very proud of my boy today, he's shown a lot of strength and a lot of bravery, all he's done is keep me laughing today when all I've wanted to do is curl up in a ball and cry! My entire body aches like you wouldn't believe. But, who am I to complain with everything this boy goes through 💙

12/02/2026

It's going to be a long day tomorrow.

We will be leaving for Sheffield at 6am. He is starting his biphosphonate infusions. I'm absolutely terrified.

I've been told that it may make him unwell for a little while after, I am absolutely begging people not to visit my house afterwards to see him, I need everyone to understand that this is going to be a lot for me to deal with and my home is my safe space and my haven where I feel comfortable. I really don't want to converse with anyone face to face nor over the phone, I will message family when we're done and going home. I don't need any help as my lovely other half will be coming to stay at mine meaning he can go and grab any shopping I might need, run any errands and anything else me and Dylan need, my dad is 2 doors down if all else fails.

Wish us luck 🤞

27/01/2026

Things haven't been much easier this week, unfortunately my best friend had to pick Dylan up from school yesterday and is now on his emergency medications. If he continues to pick up we can stop the emergency steroids tomorrow. The poor lad wants to go back to school on Thursday but we will see.

We saw opthalmology on Friday afternoon and I'm pleased to say all good on that front. Now to wait for his brain MRI.

I'm afraid to say that he is now approaching non-ambulant phase, he will be going into his non-self-propelled wheelchair as soon as school finds somebody able to push him around. Then when he goes in his self-propelled it'll be much easier for him.

The days that I have dreaded for 2 years and 2 months is happening and there is nothing I can do to stop it.

My days are filled with appointments and worry and I can feel the mum to disabled child life isolating me and crushing me as I'm finding no time for much.

22/01/2026

It's been a hard week. Dylan trialed a stock wheelchair at his appointment. His wheelchair has now been ordered, didn't think he'd manage self-propel but he has surprised me.

Unfortunately, we spent half the day in hospital yesterday after having to pick him up from school because the every day headaches are becoming a huge burden on his life and have started to cause nausea. He has now been referred for a brain MRI and an urgent opthalmology appointment.

22/12/2025

The scary truth of it all.

Credit to Defy Duchenne With Joshua, give them a follow, absolutely beautiful and terrifying journey to see ❤️

Some people think being a Duchenne mum is all appointments and wheelchairs.

They don’t see the silent countdown that lives in your chest.
The way joy and fear sit side by side.
The way love feels heavier because time feels smaller

This life teaches you how to love fiercely…
and how to grieve while someone is still here.

If you know, you know.

22/12/2025

Just an update, I don't want to make it long because this mum is really struggling this season.

Dylan has mild secondary osteoporosis. This is the beginnings of progression. The time I never wanted is coming quite fast and I am struggling daily in my head with this.

He has to start biphosphonate infusions February 13th. This requires emergency steroid drugs as it's likely to make him quite poorly. I really am dreading this. Unfortunately only one adult can go with him due to space on the ward, my support network won't be able to be there.

He will have one in February at a low dose, another one in May at same dose, another in August and then every 6 months until he stops growing, usually around 17 years old.

Dylans bloods showed that there are no biochemical signs of puberty. This one has upset me. All I ever wanted is to watch my child grow and that might just have been stripped from us.

That's the thing with DMD, it strips your child and you of your dreams for a future. He still has a bright future, but I don't feel like I do. Selfish, but it's mum worry that never goes away.

Merry christmas everyone, please remember who you have around you, love them fiercely ❤️

26/11/2025

It's been a very tough day; we went to Sheffield Children's all day. 9:30am to 4:30pm for the multidisciplinary appointments. Here's the updates.

We had Obs (BMI, ECG, BP, pulse), then cardiology. Then DEXA scan, then metabolics/endocrinology, then neurology, then respiratory physiology, then respiratory, then a blood test.

Obs - 39kg (6st 1lb)... he's put on just short of a stone in 4 months, almost 2 stone in 11 months. He's slightly taller but measuring shorter than he should. Blood pressure sitting nicely, pulse on the higher normal side but not worried. ECG as normal as it can be.

Cardiology - ECG confirmed okay. Echo as normal as can be. No action required, but after his 13th birthday next November his lisinopril will increase and a beta blocker will be added onto his medication regime.

DEXA scan - uneventful, he enjoys laying there for half an hour in a warm room!

Metabolics/endocrinology - here we go... they've spotted some spinal damage in the upper thoracic region. They are now preparing to give bisphosphonate infusions as his bone density has reduced some more. This is due to his daily steroids use, known for reducing bone density, these infusions allow calcium to support vitamin D in better and more efficient bone growth production and density. The metabolics consultant will know more when the radiologist reports back. If he gives the go ahead he will have an infusions every 3 months and then every 6 months. He will be required to go on his emergency medications after the first 2 sessions at least as it can make the boys quite poorly. We will know more about the grading of his spondylolthesis with this report, too.

Neurology - his physio assessments readings were faster than the last appointment in June, which sounds great but his abilities vary day to day, today was a good day for his mobility despite his ongoing mammoth battle with it. They are hoping that Grimsby wheelchair services will offer the opportunity of a mobility scooter, I queried self-propelled wheelchairs but unfortunately his arm strength is not there to allow for this. They mentioned that we can increase steroid dosage but currently optional, I declined but will agree to an increase in 6 months when they see him again. I have also declined an upcoming, to be confirmed and approved by NICE, a new drug coming. They are ultimately happy with him but expressed the need for me to have the hard conversation with him, phone appointment for that booked for Friday.

Respiratory physiology and respiratory medicine - needs another urgent sleep study before Christmas due to some strange symptoms. His lung function tests were a breeze but they did stress that they aren't 100% accurate and we are to stay proactive in spotting anything new. They're happy with him but have given me a number to call if I see anything more, that one feels quite unsettling as though they are expecting something to happen soon but we keep moving.

Bloods - all hormones are being done as I've noticed small parts of puberty beginning, but due to his stunted growth height-wise they need to check it out. They also added bloods to check that he is suitable for bisphosphonate infusions.

It has been an incredibly hard day but I'm extremely proud of his resistance and bravery today. Neither of us could do it without the loving support of my Jack ❤️

23/11/2025

This was Dylan's case ❤️

"I have received everything and I cannot express my gratitude in helping me to get what my son needs. I'm really happy to say that we have now ordered a car for my son through Motability, this will completely change our lives!"

My casework team and I work hard year-round to support local residents across Great Grimsby and Cleethorpes.

If you are in need of any assistance, you can contact my office at melanie.onn.mp@parliament.uk

03/11/2025