Fire fighting in more ways than one!

Hello, again, Hello!

Love a bit of Neil Diamond! Thank you all once again for your very generous feedback on my blog. Please keep sharing it on social media so together we can raise more awareness of Duchenne Muscular Dystrophy.

I’ve think i’ve suffered my first case of writers block over the last few days (I know what you’re thinking but I’ve done 2 blogs now so I consider myself to almost be a qualified writer!). The ‘block’ was down to a busy weekend (which I’ll come to later) followed by a mad Monday to start the working week but I’m back with a vengeance!

One thing I didn’t get to include in my last blog was to document that we faced our first real obstacle a couple of Sunday’s ago. We decided to have an impromptu family trip to Liverpool to visit the World Museum as part of homework projects and to make it more of an adventure for Mila-Rose and Alfie we took the train.

We arrived at Newton-le-Willows station (it has recently had it’s facilities updated). We purchased our tickets and the man in the ticket office had seen that Alfie was in his wheelchair. The platform is on the second level but there is a lift to access it 👍🏻

The Lift was out of service!

We returned to the ticket office to ask how we were to access the platform. We were told the lift had been broken a few days and that was it! No offer to help, nothing! We were left to navigate 2 flights of steep stairs alone. We had to get our disabled 4 y.o. son out of his wheelchair, Louise had to carry him whilst I held Mila-Rose’s hand to make sure she was safe. I also had to carry Alfie’s wheelchair and believe me they aren’t the lightest and neither is Alfie! We had no assistance from anyone at the station! 😡

We were then left stranded on the platform when the train arrived as the train guard wasn’t aware we needed assistance. She was very helpful in providing the ramp for access to the train and also very apologetic. She explained the guy in the ticket office should have requested wheelchair assistance. When we arrived at Liverpool she again assisted us with the ramp and said she had also reported the incident.

It was a bit of learning curve for us as a family. I’m not sure if we were naive to think that things would just run smoothly but it also made me realise the constant battles we/Alfie face in the future as facilities or staff training aren’t up to standard for people with disabilities in some places. If either of us had been alone that day then we’d have had to go home and be faced with 2 disappointed children. It would have been impossible for anyone alone to board the train.

Nb. Nearly 2 weeks on I’m still awaiting a response from Northern Rail.

Anyway enough of the negatives, let’s talk about the positives that are happening in our life!

First and foremost, we have received a confirmation date from Wigan and Leigh NHS Trust for the presentation of ‘Duchenne from a Parents Perspective’.

Lynnette Ellison from Action Duchenne will very kindly do a presentation to representatives from various departments of our local NHS Trust. This will include speaking directly to the Consultant that regrettably confirmed Alfie’s diagnosis over the telephone. From the presentation we hope to turn the diagnosis process into a ‘positive’ for another family. When I say positive, I understand that the news isn’t what the family wants to hear but if they receive instantaneous support from Wigan and Leigh NHS Trust then we have achieved our aim.

Hopefully it may also help the medical staff recognise the signs and traits of Duchenne a little bit earlier. Alfie used what is called the ‘Gower manoeuvre‘ to get up from the floor and had been using it since being able to walk. The consultant who diagnosed Alfie recognised this immediately at our paediatric appointment as it’s a medical sign of muscle weakness. I’m not saying it would’ve helped in Alfie’s case as he was diagnosed at an early age but some boys are only diagnosed at 7 or 8 years old. The main thing is that we appear to be moving in a positive direction on this matterband I’ll post updates at a later date.

Secondly, we’d like to say a massive thank you to Chris Evans (no not the radio dj or the actor, he’s a local lad!), Greater Manchester Fire and Rescue Service and all of Green Watch at Leigh Fire Station. They made it possible for Alfie to fulfill his dream of becoming a Fire fighter for the day.

Alfie along with our close family and friends were very kindly invited to spend the morning at our local Fire Station. 3 Fire Engines turned up at our home to escort us there and we all did various duties that an everyday Fire fighter would do during their working day. The staff were fantastic and really went out of their way to make it a special day. It was an amazing experience and one that will live with us all forever.

Our third and final bit of positive news this week is that Alfie has been granted a wish by Make A Wish UK. They’re a charity that create life-changing wishes for children with life limiting or critical illnesses. Their work is amazing.

We’ll be jetting off to Disneyland Paris for a long weekend. As of yet, we haven’t told Mila-Rose or Alfie, all they know is that they are going on a special trip. We can’t wait to see their little faces light up when they find out where they are going. It’s going to be amazing! Both Louise and myself are very excited. Louise more so than me as when we went on our honeymoon to Disneyland Florida she was shoving all the kids out of the way to get photos with all the characters!!! Bridezilla coming through!!! 🤣

I’ll be posting a full report of our trip in the coming weeks 👍🏻

Now as promised i’m finishing off with a funny story. It’s another true story and about a good friend going to the toilet! I won’t name her but she has very kindly let me use this story so we’ll call her MGF (My Good Friend).

This one time at band camp MGF went into a public toilet and noticed it was covered in $h!t. She went out of the cubicle and chose another one. As she was washing her hands, another girl did the same thing as MGF, walking in and walking straight back out.

In her wisdom MGF said “I’ve just done that!” Meaning that she’d just gone into the cubicle and come back out. Only later did she realise that the girl probably thought she was proudly owning up to making the $h!tty mess!!!

If you have a funny story you’d like me to share please email me and I’ll post it in a future blog.

au revoir (just practicing!)

#DuchDad

A Life Fulfilled In Everyway

Hello again!

First of all I’d just also like to say a big thank you to everyone that has taken time to read my blog. I really appreciate all your support and your positive comments. You always worry when you start something new, how it will be perceived by others. #sofarsogood

I had messages from fellow Duchenne Dad’s/Mum’s and Grandparents. I also had a very supportive message from Jon-Rey Hastie, CEO at DMD Pathfinders. Jon, 38 has DMD and was diagnosed at the age of 3. He is recently married and a homeowner! For most people this is the norm, but for a man with DMD it’s truly inspirational and proof that a positive future is possible.

I’d been thinking of doing a blog for a while but like most things I just kept putting it off. Although this is only my second blog, I do feel that it has helped me in releasing my thoughts. I feel now that I have an ‘out’ where I can release a bit of the tension/stress rather than it being pent up inside. Almost therapeutic.

It didn’t take me long to think of my blog tagline, A Life Fulfilled In Everyway… you may or may not have noticed that it also spells out A.L.F.I.E when abbreviated 😉

My next challenge is thinking of one for our daughter, Mila-Rose! 🤔 (Answers on a postcard please)!

I think when something life changing happens to you or someone in your family you can either sink, stay afloat or swim. Thankfully I’d like to think we’re really going for it as a family and liken our efforts/plans to swimming the channel!

We had a few very dark months after Alfie’s diagnosis but the love and support from our family and friends supplies us with so much strength and determination to go out there to make the most fantastic memories for our two beautiful children. How could we deprive them of a childhood full of memories? We can’t just wallow in self pity.

Not that we wouldn’t have created marvellous memories for them anyway, it just pushes you more to grab life by the balls and squeeze every last bit out.

The picture of Mila-Rose and Alfie for me says it all, they are both so happy and smiley (well most days!). I wouldn’t change either of them in any way, shape or form (aside from the obvious!). I often find myself just gazing at them both when we’re at home and feel so blessed to have 2 beautiful children. I often tell my wife Louise that they obviously get their looks from their Daddy!

Alfie is very affectionate. He loves to sit and stroke your face. He’ll say “love you Daddy/Mummy” or his favourite at the minute is to ask if you’re his best friend! I could snuggle up to his cheeks all day. He has beautiful big brown eyes and eyelashes every woman would die for! He’s just too cute 🥰

Mila-Rose is 6 years old going on 16! She has her Mum’s beautiful looks and glowing olive skin. Her big brown eyes will break many a heart in years to come. I can see already that I’m going to have practice my ‘you upset my daughter and there’ll be trouble’ look! She’s a very sensitive soul though and as well as worrying about Alfie’s future, you can’t help but wonder how things will affect her in the long term. We’ll do anything and everything to make sure she gets the best start in life with undivided love and support.

We live for the moment, try to take each day as it comes and not think too much about the future. Some days that’s mentally and emotionally very tough. You find that your mind takes over and you can’t help to wonder the what, when or why? For me personally, this usually happens to me when I’m on my own away from Louise (my wife), Mila-Rose and Alfie. Thankfully I only work 40 hours a week so it’s not like I’m away from them that much!! #stircrazy

Duchenne is a rare disease and each boys prognosis will be completely different to another so although you know what lies ahead in the future, you’re not quite sure when certain things will take effect.

I’m not altogether sure if everyone quite understands that though and may think that nothing is going to happen just yet so you have no need to worry. Let me tell you, it’s always there and in some aspects (not all) it’s probably tougher for the parents to deal with a diagnosis like Duchenne as kids are often very resilient and just get on with things. Maybe only the parents who are on a similar ‘journey’ will only ever understand that the pain for parents will never go away after diagnosis . (I hate that word JOURNEY, sounds like we’re on X-Factor and the dream is over!) 😂 Note to self, don’t use it again!

Alfie is very strongwilled and stubborn (i’m not quite sure where he gets the latter from!) but hopefully this will stand him in good stead in the years to come. I’m currently trying to build his sense of humour up by playing little practical jokes on both Alfie and Mila-Rose or winding them up. Alfie’s usual response is “Are you joking Daddy??”, followed by a cheeky laugh!

I think if we can get through the tough and testing times with a bit of humour thrown in, it won’t make what’s thrown at us in the future quite as hard to deal with. We watched the film The Fundamentals of Caring on Netflix a few months ago and unbeknown to us at the time of choosing the film, the lead character Trevor (Craig Roberts) has DMD. At that moment we both looked at each other and considered switching to another film. I’m so glad we didn’t. It’s about a writer (Paul Rudd) who retires after a personal tragedy and becomes Trevor’s carer. The two then embark on an impromptu road trip, but they start to understand the importance of hope and friendship. Myself and Louise were crying laughing one minute then shedding tears the next. It’s a real emotional rollercoaster of a film but it gave us both a huge sense of hope for not just Alfie’s future but our family. I really recommend you give it a watch.

Speaking of humour, I’ve made an executive decision that at the end of each blog i’m going to sign off with either a funny story/tale or maybe even just a joke so here goes and this is a true story that happened to me when I was 12/13 years old:

I had been playing football at the park and I bumped into an elderly gentleman who was mates with my Grandad. He was a regular churchgoer and a proper northerner!

He also knew my Dad. I was chatting to him about football and then he asked me “What turn’s your Dad on?”.

I was a little taken aback by his question as one he was a churchgoer and two it’s not something you ask a 12/13 year old boy about his Dad!

He persisted asking the same question a couple of times.

He saw my bemusement before saying sharply “What turn is he on, 6-2 or 2-10?”.

Only then I realised he meant what shift was he working!!!

Thank you and goodnight. I’m here all week!

#DuchDad