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!)