Duch Dad

Happy Easter peeps! What’s the best way to make Easter easier? Put an “i” where the “t” is! I hope you’re all staying at home getting ready to raid the cupboards and the fridge on this glorious bank holiday weekend. I mean it’s not like you’ve not been doing that for the last 3 weeks is it??? I walked past my fridge last night and I could’ve sworn I heard two onions singing a Bee Gees song. When I opened the door it turned out it was just the Chives talking!

I’m here for 12 weeks, well another 9 in fact, not that I’m counting down!

So in a week that started with Boris Johnson in intensive care and ended with him playing Sudoku and watching Love Actually followed by Withnail and I, here’s what happened in our #SelfIsolation world that we now relate to as Salesways or Alfcatraz! (As you can tell the dark sense of humour is accelerating!).

Hash Monday

The week started off with the delivery of our government food parcel. It’s becoming quite famous on a Duchenne Dad’s group that I’m a part of, as Monday’s are now known as Hash Monday! The parcel is a mix up of Fruit, Veg, Tinned products etc and includes a tin of Corned Beef, Potatoes and Carrots. Perfect ingredients for a bit of Corned Beef Hash. This week I decided to go with the American version and served it with some ‘over easy’ fried eggs (minus the carrots). The problem that arose for myself was the key was missing on the tin. Now I don’t know about you but I never find it easy to open a tin of Corned Beef at the best of times but without a key it’s different gravy. I set about it with the tin opener and you’ll never guess what happened? The tin opener broke! So for the past week I’ve been opening tins of tuna, sweetcorn etc by puncturing around the edges of the tin with the sharp end of the tin opener. Thankfully my cousin, Trish did a bit of shopping for us this morning and got us a new tin opener. I know exactly what you’re thinking, how rock ‘n’ roll is this self isolation malarkey!

That was the week that was

This week we’ve set about several tasks around the home to keep us occupied. Cupboards/Drawers cleared out. Clothes sorted. All those extra coat hangers gone. Next on the list was the garage clearance. Before #Coronavirus was upon us, we were at the closing stages of finalising the adaptations for our home. These were due to start in the Spring. For the time being the adaptations are on hold but our existing garage at the rear of the house is to be knocked down and replaced with an extension that will become Alfie’s bedroom and wet room for when he is older and no longer has the same mobility he has now. At the beginning of the adaptation process, I can only describe it as preparation for a horrific car crash. You find yourself going to a showroom looking at height adjustable baths, self cleaning toilets and the rep from the company is asking you questions that you either can’t really answer or just feel sick at the thought of imagining the day you’re aiding Alfie to use the equipment. The garage isn’t used for the car, it’s a storage hub that when you clear it out you just think how the hell did all that fit in there! Skip hired, garage almost cleared and another job almost done!

#ClapForTheNHS

Thursday’s have now become the day we thank all the UK’s key workers by clapping at our front doors at 8pm, in particular for all the amazing frontline staff of our NHS. As the weather had been nice we decided to do a spot of gardening with Mila-Rose and Alfie. We had some blue and pink stones in the garden so Louise, Mila-Rose and Alfie had done some love hearts in the front garden with the stones so the idea came into my head to make an NHS logo in the middle of them so we could show our appreciation. Here’s the end result…

Social Media Questions

On Saturday, I did a post requesting for anyone to send any questions in to me that they’d like me to answer. The questions came in thick and fast!!! So here’s the answers!

1. My nephew Finley asked How many laps of the garden was my 2k walk? The answer to that will be revealed on my next walk as I didn’t count!!
2. Our good friend, Susan G asked if we were still getting dressed up as she didn’t think we had any slobbing gear! Sorry to disappoint you Susan but it’s t-shirts, joggers and shorts only during self isolation. As for the quality date time, it’s like being on an all inclusive holiday for Louise as it’s a la carte meals all day, everyday! We’re using the evenings to Netflix and chill as when you have 2 children like ours it’s literally that! Sit down and watch a boxset plus we’re experienced social distancers!!!
3. Another good friend, Paul asked if the beard is past the itchy stage. I think that question was for Louise so I’ll check!!! Seriously though, it’s actually at the stage now where usually I’ve always given in and had a shave. I’ve bought myself some beard oil so if I get to the end of next week I think I’ll surpass the itchy stage. By the way it has many colours but its predominantly salt and pepper or distinguished as I like to call it!!

I’ll leave it at that for this weeks isolation installation. I’ve got 2 Lamb Shanks in the slow cooker that need attending to!

Stay Safe. Stay Home. Eat Chocolate. Be Merry.

Kieron

#DuchDad

Happy Groundhog Day!

Is anyone actually keeping up with what day it is? I think it’s the weekend but I’m actually not quite sure, each day just slowly blends into the next one. What I wouldn’t give to go for a walk/run and see the view pictured above. I think once this is all over we’ll certainly appreciate the things we take for granted. The choice of which joggers to wear and whether to shave my ‘isolation’ beard off is becoming an overwhelmingly difficult daily decision! Oh the joys! The main thing is though we’re all safe and healthy so that’s all that matters at the moment.

Home Schooling

Home Schooling has taken a bit of a dive this week, everything seems to start off really well in the morning. The focus is there from Mila-Rose, Alfie not so much. We break for lunch then playtime then seems to last the rest of the afternoon! Absolutely no interest whatsoever and by 7pm they’re both asking to watch a film!!! Errr no, it’s bedtime soon and you’ll be off upstairs to get your PJ’s on!

Routine

As I said, Alfie’s been taken out of his routine and boy has it shown! Most boys with DMD have learning or behaviour difficulties. DMD is not just a muscle disease. The disease is caused by a genetic defect that influences the development of the muscles AND the brain. Children with DMD are missing a protein, called dystrophin, from both their muscles AND their brain. Without dystrophin in the brain, some areas may not function as efficiently, and this likely results in the observed learning problems that children with DMD have. If a brain develops without dystrophin it may not transmit information as efficiently as a normally developing brain. This lack of efficiency may impact upon the coordination of cognitive information; that is to say, Alfie may have difficulty processing cognitive information in a quick and coordinated manner, something that might be rapid and effortless in other children. As such, Alfie has difficulty when trying to process information which requires coordination of multiple pieces of information. For example, trying to process a set of instructions with many pieces. A possible real life example: We’d ask Alfie “Go upstairs, brush your teeth, put your PJ’s on and get into bed.” We’d then go upstairs and find he’s put the PJ’s on the bed. He didn’t do as he was told, but he feels he has, because he could only “get” part of what was said and knew it had something to do with PJ’s and bed. He can understand the parts of we said, it’s when it’s all put together that it is just too much. (Information source: Parent Project UK)

Boys with DMD have difficulty discriminating speech sounds. Alfie makes sound substitutions in his speech and has difficulty repeating verbal sounds accurately, and then finds learning to “sound out” words problematic. We have an Amazon Echo at home, but instead of ‘Asking Alexa’ he says ‘Balexa’. In general, the children with DMD show reading difficulties similar to those shown in children with dyslexia or reading disabilities, and often cannot tell some sounds apart from others.

Put this into the context of taking Alfie out of his usual school routine and trying to Home School not just him but Mila-Rose. To be honest Mila-Rose will actually sit down and do some of her school work and she’s an excellent reader and very creative with her writing. Maths needs a little bit of work but it’ll come to her in time. Maths was never really my strongest subject at school but through life and work experience you get by. You can imagine what the last 10 days have been like. It’s made with myself and Louise even more astonished as to why his EHC plan isn’t in place yet and the fact that he requires access to a one to one and repetitive learning. His attention span for each subject is roughly 10-15 minutes at the most then his focus waivers. This will lead to frustration and that then leads to behaviour where we encounter a massive meltdown and sometimes an aggressive nature which is very distressing. We have now decided that we’ll learn Alfie through play and use activities that will enhance his fine motor skills. He loves painting/drawing, cutting and sticking, jigsaws/puzzles, dancing/singing so I think this will be a positive way forward for the next 10 weeks. Don’t get me wrong it’s not all negative, Alfie is a very loving and sociable boy the majority of the time. His rote memory is exceptional, he’ll remember a place or memory from 2 years ago like it was yesterday! He can remember large chunks of information, like conversations from movies, words to a song etc. He’s a very comical little character and he doesn’t half make us laugh with some of the things he comes out with. He also has a little bit of an operatic voice when he sings so who knows where that will get him in the future.

Happy Groundhog Day!

See what I did there!! This week has been very tough mentally, last week was great as the sun was out and we could do school activities outside. Video calls were all the rage and the whole self isolation thing was a bit of a novelty. Week two has really been a wake up call and I hope this isn’t the shape of things to come. The last couple of days, I’ve been doing some Binaural Beats sessions on Spotify and also downloaded the CALM app on my phone. It’s a kind of stress relief meditation exercise. The first one was that good I fell asleep! I restricted myself to 20 minutes the next day! I think I will partake in some laps of the garden, perhaps 200 laps might equate to a 5k run. Even my steps have been well down on my Garmin. I’ve also been trying to focus on various Action4Alfie projects to keep me focussed. Later this month is Alfie’s 6th birthday and sadly we’ll still be in isolation. We were dreading the conversation with Alfie that he wouldn’t be able to have the Toy Story 4 party he’d planned but he actually took it quite well. We softened the blow by designing some virtual party invites so he can still share his birthday with his friends on Zoom. He’s now on countdown and asks every morning how many days it is until his party!

Alfie’s 6th birthday

So anyway, I decided to come up with a little social media campaign for Alfie’s 6th birthday. I’ve invited people to leave a video message on his social media pages and at the same time try to help raise awareness of Duchenne and the #StayHomeSaves Lives to protect the vulnerable. Now, when I have these ideas I visualise the perfect scenario of ‘A’ list celebrities getting wind of it, wishing Alfie a Happy Birthday and raising much the needed awareness of his condition. I actually even went as far in my head imagining having a video call ‘live on Good Morning Britain’ with Piers Morgan discussing how I came up with this amazing campaign to make Alfie’s birthday extra special. It would be followed later by a video chat with Holly Willoughby!! Well we can all dream!! (You see what self isolation does to you, we’re not even 2 weeks in!). So anyway I went ‘live’ with the campaign and let’s just say it’s taken off very slowly!!!! https://twitter.com/Action4Alfie/status/1245301561716355072?s=20

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Unfortunately during these unprecedented times, people are more interested in sharing viral videos/memes of people doing stupid things whilst in lockdown! Frankly they are just becoming a little bit boring! I find it really frustrating when you’re passionate for people to see what you’re trying to do doesn’t come to fruition the way you envisaged it. Then again, maybe social media is a place for other people to escape from the real world. Imagine if one of David Beckham’s kids had Duchenne or say, Prince George was diagnosed with it? We’d all be reading about it, social media would be an outpouring of grief and everyone would be commenting how awful it is. We’d all know all about how it affected them and their families. The support network would be there and I’m sure the standards of care would literally change overnight. Now you may think I’m just feeling a bit sorry myself and maybe I am but this is what you come up against in terms of trying to make people take note. I’ll keep plodding on, I won’t give up the fight and I certainly won’t stop trying to raise awarenesss. My drive and determination will always be there and it will take just one high profile person to share or retweet a post then it will snowball!

Weekend luxuries

It’s now Saturday afternoon and we’re trying to make the weekend, feel like a weekend. During the week we all sit down and eat together which I really do enjoy. Tonight though we’ll eat when the kids have gone to bed! We’ve ordered in our luxury items tonight, it’s going to be like when they all sit down for the big feast on I’m a Celebrity, Get Me Out of Here! I’m having Rib Eye Steak, Chips, Asparagus, Mushrooms and Peppercorn Sauce washed down with a nice glass of red. Louise is having a Chinese banquet, hopefully there won’t be any bats present! I’m looking forward to relaxing and having a drink tonight. I think when you’re in this isolation situation, it could be quite easy to fall in the trap of having drink every night. By week 12 though you could have a massive problem that wasn’t there at week 1 and we certainly don’t need anymore problems in our life so it’s a weekend tipple only for us. Once I’ve devoured my Steak, I’ll be ‘heading out’ to catch up with my mates on Zoom. I’ve found this really good to wind down and have a sense of normality, it’s good to see familiar faces and to chat or have a moan about the week gone by.

Which reminds me, earlier this week we celebrated our 8th Wedding Anniversary. I looked into deep Louise’s eyes, my heart fluttered, I felt a connection, something deeper, something magical, I was transported to another place and I thought, blimey these binoculars are brilliant!

I’ll leave it at that for this weeks isolation installation!

Have a great Groundhog Day!

Stay Safe. Stay Home. Stay 2m apart.

Kieron

#DuchDad

Good day to you! I hope that like me, you are in the comfort of your own home and staying safe.

Myself, Louise, Mila-Rose and Alfie will reside for the next 3 months (or 12 weeks / 84 days / 2016 hours / 120,960 minutes to be precise) in our happy humble home. I’m not even going to calculate it in seconds as that will probably tip me over the edge at the realisation of this extraordinary historical event. A global pandemic has brought us together as a family to prevent our precious little boy Alfie and others like him from contracting this killer virus.

As we expected, the official NHS text message arrived advising us against leaving our home for 12 weeks. We’d expected Alfie to be on the Coronavirus vulnerable list. We’d had an appointment at Manchester last week with his consultant, who informed us that as he takes steroids, it was highly likely he would be included in the extremely vulnerable category.

I’m going to use my blog to document the ups (I’m positive there will be many), the downs (I’m definite we’ll have those), the uncertainties (well who knows?) and the shear fear (I’d rather not go into that just yet) of self isolating. I never thought that my lifetime something as unprecedented as this would happen. We are now part of an historic event, something that will be discussed for many, many years to come. I can only describe it as being dropped into a Netflix movie that you can’t get out of.

Last week our anxiety levels began to rise as the virus was spreading fairly rapidly in the UK. Almost at a higher rate than in Italy where Coronavirus was killing people with underlying health conditions at a very fast pace. There had been talk of the schools closing down imminently earlier that week. By Tuesday evening, we decided enough was enough and we couldn’t put Alfie at risk any longer. We put him into self isolation along with Mila-Rose from Wednesday onwards. By Friday that week all the schools were to close apart from being available for the children of key workers. Home schooling was now also on our agenda.

By Friday evening, the news was getting bleaker by the minute and the announcement came from the PM Boris Johnson that from Saturday those who were classed as extremely vulnerable would have to be shielded for a period of 12 weeks.

I usually do our weekly shop on a Sunday but I’d decided that should we all go into self isolation from Monday onwards then we’d need supplies. Toilet Roll was the bizarre choice for people to buy in bulk. Why, I don’t know? I mean it’s not even a virus that causes you to empty your bowels frequently! Panic buying was happening at speed. The Supermarket’s were steadily reducing in stock, if we were to go into isolation then I’d have to go early doors.

Tesco Leigh, 6am Saturday. It wasn’t too bad in regards to the amount of people in the supermarket and I managed to get most supplies that would get us through without actually panic buying like most other people seemed to be doing. The meat counters were very limited as were tinned products, bread, hand sanitiser. Still no toilet roll either. It’s ok though, I’d bought some cheap Man United and Wigan RLFC shirts as back up so I could always use those to wipe my arse should I get desperate! My main concern once I had everything in my trolley was going to the checkout. The country had been advised to social distance at least 1m apart. I went to the checkout and this procedure wasn’t being adhered to in the slightest. I decided to circle, almost like an aeroplane waiting to descend onto the runway. The queue was getting larger but still no social distancing. I couldn’t risk standing in a queue where someone would stand breathing down my neck.

I decided to speak to a member of staff to ask if there were any designated checkouts for anyone shopping for a vulnerable person. I explained about Alfie and his condition. I wasn’t expecting any preferential treatment but she kindly requested one of her colleagues to take me to a checkout away from everyone else. Which was a really kind gesture and one very much appreciated.

Self Isolation (Week 1)

I’m now writing one week on from the Tesco big shop. It’s Saturday morning. Alfie’s watching The Descendants on Disney +, Mila-Rose is reading Diary of a Wimpy Kid (very loudly!) and Louise is doing her Body Combat class upstairs in the bedroom (also very loudly!). Louise is finding it difficult as she regularly goes to the gym to do her class but like most places, the gym is closed indefinitely. Home schooling has proved to be a difficult task this week and in fact most days it’s gone out the window as the weather has been strangely quite good this week so we’ve improvised with outdoor learning. Alfie has quite complex learning so he can’t hold his attention to a subject for too long. This is proving to be a challenge so Louise spoke to his speech therapist midweek and she suggested to try to learn him via tasks such as cooking, computer work and colouring etc. So the first task we made our own pasta sauce with hidden veg and with the bolognese leftovers (rationing meals so they go a bit further) we made a Shepherds Pie for the next day!

Other highlights of our week have been our video calls to our family and friends. We’ve regularly had calls with both sets of parents and they’re really enjoying see each other. It’s such a very strange time and you kind of wish that you could all go through it together. As they’re all golden oldies (they won’t thank me for saying that!) but we do worry that they’re ok and they’re not going out and vice versa. Although they’re safe in the knowledge that we can’t go anywhere but have been worrying about if we have enough money/shopping etc. The video calls to our friends have just been such a godsend, we’re lucky that we have the technology to do this to enable us to keep such regular contact. It’s great to see other peoples faces and you almost want to reach into the screen to touch them to make sure they’re real! Mila-Rose and Alfie in particular have loved seeing their friends and you can see it’s making them so happy. It must feel very strange for all children being taken out of school so drastically and told they can’t go anywhere or see their family and friends. This is why we’ve not be so intense with their schoolwork this week, we want to disperse the fear and anxiety of what’s going on in the world outside by basically just having fun. We have enough stresses going on in our lives without these additional add-ons. One additional positive for myself this week is that my counselling has finally started! Albeit by telephone appointment but I’ll probably require it even more during this 3 month period! I’ll into more detail about this in my next blog.

I think this period in all our lives will change people’s outlook on how they not only live their life but also appreciate what they have. We live in a world where we have to have everything, whether it be the latest smartphone or something just to keep up with the Jones’. We’re all very materialistic. My Mum said the other day during one of our calls that ‘God moves in mysterious ways’, now I’m not a church goer or remotely religious in anyway but maybe this is a lesson to us all on how we go about things in the future. I’ve really enjoyed (beyond all the fear and uncertainty) just sitting down together as a family for lunch and tea/dinner. A basic everyday family thing you may think but put into the mix work, day to day stresses (we have more than the average family), bedtime routines etc, it’s actually very rare that we do this simple basic family thing very often. Instead you find you get home from work at say 6pm, spend a bit of time reading with them both then palm them off to bed so you can get something to eat before it’s time for you to go to bed yourself.

We live in a fast paced world, one where if an email doesn’t come through quickly enough we press the receive icon furiously until it finally arrives. Why? Maybe we all just need to slow down a little and take that time to make/bake something that’s not in stock at the shop/supermarket, take the the time to listen to your son or daughter reading at night instead of concentrating on your empty stomach and when it’s going to be filled. Hopefully this is just an unprecedented time of our lives and it will pass without too much hurt but maybe it’s someone just pushing the ‘Stop the world, I wanna get off’ button temporarily so we can reevaluate the way we live and appreciate our loved ones a little bit more.

Thank you to all the NHS staff, Supermarket/Shop staff and other key workers who are helping to keep our country as safe as possible. It’s very much appreciated

Have a great Groundhog Day!

Stay Safe. Stay Home. Stay 2m away.

Kieron #DuchDad

How do you cope with these things? You simply have to find ways to manage. You devise coping mechanisms and keep yourself busy. I avoid situations that lead to solitude or silence, instead preferring to be busy.

The above is a quotation from Colin Parry, father of Tim Parry, a 12 year old boy who was tragically killed in Warrington in an IRA attack in 1993.

Looking back at the Warrington bombings, the effects it had on the families of the 2 boys that lost their lives in the attack were and still are utterly devastating. Personally, I used to think that Colin Parry looked like he was ready made to deal with the situation he’d been dealt with. He had a strength and determination that seemed to carry him through. He was resolute.

Little did I know at that time that it was actually his coping mechanism. It was his way to do something for the boy he loved that was so tragically taken from them at such a young age. Our circumstances are very different and I could never imagine what the Parry’s have been through but we have also had to grieve the loss of the life we planned as a family. Things won’t ever be ‘normal’ again for any of us but we’re ever so determined to make life special.

Colin and his wife, Wendy have never had justice for their son’s death, nor have they ever craved it. For them, it was more important that his name was honoured by moving the peace process onwards. Their son lives on through a charity they set up in his name. The Tim Parry and Jonathan Ball Foundation for Peace strives to help victims of terrorism, whatever age, whatever the circumstances of their loss. Has this been their saviour, their comfort? Probably yes.

Not until Alfie’s diagnosis did I realise this type of strength and determination existed. I used Colin Parry as an example to myself of someone who fought hard for their son and most importantly their family.

I found that strength and focus. In late March 2018, Action4Alfie was launched.

I had deliberated on starting a crowdfunding page for Alfie after his diagnosis. 2 very good friends, Brad and Russell convinced me to ‘push the button’ and make it happen. When I launched the Action4Alfie Justgiving page, the kindness and generosity of our family and friends was just so overwhelming. Within a couple of days we had reached over £1,000. It then just kept growing and growing and growing. Over a year on and we have raised over £11,000. Amazing!

To think that I’d almost not ‘pushed the button’. My reasons for not doing so initially was that I didn’t want to appear to be personally asking for money. I tend to overthink sometimes and wondered what people might think. On the other side of the coin though, we had to do the best for our son who one day might require funds to help him in the future. I think anyone in this situation would do the same for their son/daughter. It’s a no brainer really.

As the funds grew I then wanted to start some fundraising events. It gave me a focus and unbeknown to me at the time it was rapidly becoming my coping mechanism. In organising events, I wasn’t thinking solely thinking about Duchenne but more about what I could do to help deal with the hurt and the pain the diagnosis had caused our family. It helped me forget but most importantly it felt like I was doing something and at the same time creating memories for our family.

Our first event was to hold a screening of Alfie’s favourite film, Toy Story at our local parish church. With the help of the amazing Leigh Film Society this was made possible. We also had a guest appearance from the actor, Matthew McNulty. He very kindly read stories to the children that evening. Something Mila-Rose and Alfie still talk about to this day. My ROCK, PAAAAAA-PER, SCISSORS rendition isn’t a patch on Matthew’s version though!

Matthew has also since been a great supporter of Action4Alfie and has supported us by providing signed TV memorabilia for us to auction (details to be announced soon).

Since then we’ve held an online raffle for a signed golf bag that Justin Rose kindly donated, had a band night, friends have held fundraising evenings, competed in running events including the Space Coast Marathon in Florida! Everyone just wanted to help.

We also ran a small social media campaign to try and raise awareness of Duchenne. It involved celebs doing an ‘A’ symbol with their hands. We had stars from Coronation Street, TV stars, musicians and Rugby League players doing the sign. Our most famous coup was Liverpool manager Jurgen Klopp pictured holding one of our t-shirts.

Action4Alfie has been a big distraction and has given me a drive to raise awareness, help others and make fantastic memories for our family. As I mentioned in my last blog, we recently went to height adjustable baths demonstration. The bath that was on display had a jet air spa which would be beneficial to Alfie’s muscles in the long term. It comes at an additional cost though but having the money people have generously donated helps us to provide Alfie with these additional extras.

As we achieved over our original target of £10,000 for Action4Alfie, the next stage is to do some fundraising for the charities that have supported us. At the start of the year we supported Muscular Dystrophy UK’s Go Orange for a Day. We’re also planning some fundraising for other Duchenne charities, in particular Action Duchenne who have been very supportive to both Louise and myself.

We also are working in conjunction with Lynnette from Action Duchenne to present Duchenne from a Parents Perspective. This will help to raise awareness to local NHS staff about recognising traits of Duchenne and also to help make sure that the parents get the support required after diagnosis.

All this helps to keep my mind focused and most importantly occupied. This blog is also fast becoming another cog in the CM wheel. Other Duchenne Dad’s I’ve conversed with have various coping mechanisms such as looking into research, exercising, taking up a new hobby. Everyone deals with it differently and find comfort in their own way.

I also did something I’ve not done in a while today (now, now it’s not rude!) and that was to SING OUT LOUD in the car. I had a rather rare afternoon to myself today and for once I had the playlist in the car to myself. Being a 90’s Britpop veteran I decided to blast a bit of Sunday Morning Call by Oasis out and man it felt good. WHAT A STRESS RELEASE! Give it a try. I think I might go and join a choir or maybe belt out a bit of a karaoke classic this weekend to sum up the how we’ll fight what’s ahead of us in the future.

First we were afraid,

We were petrified.

However, we’ll grow strong and learn how to get along but most importantly…

WE WILL SURVIVE! 😉

Happy weekend folks!

#DuchDad

It’s been a hectic last couple of weeks in the family residence, hence no blog posts for you all to feast your eyes over.

Recently we returned from a very memorable long weekend at Disneyland Paris. The trip was arranged by the fantastic charity, Make-a-Wish UK. Alfie had been nominated for a wish last year. When questioned about his wish he immediately replied that he wanted to meet a Superhero. After trying to tell him that he saw me everyday 😂 eventually it clicked that he was talking about the Marvel Superheroes at Disneyland Paris! After some applications and a visit from the wishgranters, his wish was granted. We stayed at the amazing Disney Newport Bay Hotel and were treated like royalty from start to finish. Alfie was given a ‘Genie Pass’ on arrival at the hotel. This pass gave Alfie (and us) unlimited and priority access to meeting characters, accessing rides etc. If you’ve ever been to any Disney Park then you’ll know that some queues can be anything from 2 minutes to 2 hours plus so the pass made a huge difference to our Disney experience especially as we were only there a couple of days.

Alfie managed to meet 2 of his Marvel heroes, Spider-Man and Captain America, both of whom were really good with Alfie (and Mila-Rose). They spent a lot of time with them chatting and posing for pictures. As we waved goodbye to Spider-Man, Mila-Rose took my hand and asked me ‘Why is Alfie a special little boy, is it because his muscles don’t work properly?’.

Kids really do catch you unawares at times and my heart sank. It’s one of the moments that the realisation hits home about Alfie and Duchenne. A lot of the time when we’re all together you forget about Duchenne as you’re focused on having fun and spending quality time together. I particularly find the hospital appointments really difficult as that’s when you realise the seriousness of Alfie’s condition. Sometimes you find yourself drifting away from listening to the consultant, it’s almost like you’re having an out of body experience and they’re talking about someone else’s child. “Why am I here?” I would ask myself. It’s even worse when Alfie isn’t present at an appointment, you have a feeling inside that makes you feel like you’re lying to him and everything’s a bit of a ‘cover up’. All I can picture in my head is his cute little cheeky chops.

We have spoken to Mila-Rose in regards to Alfie but only as far as explaining that his legs get tired more easily than hers and his muscles are different to the ones she has. For now that’s all she needs to know and it’s very rare she asks any questions.

We just try to keep everything as normal as possible at home. Alfie having his medication in the morning, doing his stretches and putting on his night boots are now just part of our daily routine. We don’t think about doing them anymore, we just do them.

Going back to our Disneyland Paris trip, I was shocked at the lack of respect and manners from some of the general public. We were waiting for the shuttle bus at the hotel to take us to the park. Alfie was in his wheelchair but on each occasion we tried to board the bus not one person let us get on the bus first or even help to lift his chair onto it. Now I’m not asking for priority but I know that is Brits are very courteous and would help or assist anyone with a disability without hesitation. There were groups of guys who were in there twenties bustling to get on the bus before everyone else. I wouldn’t mind but they didn’t even have any kids with them! Ne sois pas si grossier!

That aside we made fantastic memories that we’ll treasure forever all thanks to Make-A-Wish UK.

Back to domestic matters and yesterday (Wednesday 3rd April), we had a meeting with the Paediatrician who diagnosed Alfie and one of her senior managers (hereby present to state the facts and figures!). This meeting was arranged prior to the presentation that Lynnette from Action Duchenne will be kindly doing to the Wigan & Leigh NHS staff in May about Duchenne from a Parent’s Perspective. I don’t really want to go into too much detail about the meeting but let’s just say that I personally came away very much still in the same frame of mind as before I entered the meeting. Maybe that’s how I will always feel and it’s hard not to lose that feeling of Alfie being failed by the system. Apologies were made about how it was handled which I fully accept and respect. We’re trying to move things forward so that a family doesn’t have the same experience although I can’t help feeling that the same situation could still arise with another family due to ‘lack of resources’.

The meeting brought back alot of the feelings I had at the time of Alfie’s diagnosis, mainly a mixture of pain and anger really. I explained in the meeting that everything feels like a constant battle and it’s really exhausting, both physically and mentally. Not only do you have to deal with a diagnosis that changes your child’s life but it changes your future as well. The whole family in fact. We have to juggle hospital appointments, locally and at Manchester, all of which are within the working day (both our places of work are very supportive and understanding of the appointments), plan for future adaptations, which I can only describe as if you’re preparing for a horrendous car crash. On that note, we were recently shown a height adjustable bath and a self cleaning toilet. Both of which are amazing and will give Alfie independence and dignity later in his life but at this stage it’s very hard to look that far into the future. Let me tell you it’s heart-wrenching. We originally requested with his OT for a downstairs toilet for Alfie as he can’t get up the stairs unsupervised, that idea was literally pooh-poohed (pardon the pun!) by an architect and then the next thing the ball was fully rolled into the full shebang of the whole adaptations process! We have to try and explain to the demonstrators that we’re not quite sure when these will be required.

What we’re finding in most situations is that you either go from the extreme to the other or that if you don’t make yourself heard and push for everything you soon disappear and get lost in the system. If you’re in a similar situation just keep pushing and fighting. Make yourself heard.

Well that’s enough from me for this blog.

Until next time!

#DuchDad