131 Days Later (part 14)

On Thursday we received a letter from the Department of Health & Social Care advising us that we would be required to shield until 31st July. What started off as 12 weeks in lockdown will in the end turn out be almost 19 weeks. I’d like to know why the general public can go and get their hair done then do a bit of shopping and then go for swift half down the pub afterwards whilst young boys with life-limiting conditions can’t attend overdue hospital appointments for their heart, lungs and bones.

Are these simple everyday things more important than a young child’s health? 

It again raises the question in regards to Disability Rights. During this pandemic, the extremely vulnerable have been left at the bottom of the pile. Any information we have found out has been secondary information. Where is the voice for the vulnerable? We have seen many protests over the last few weeks but none supporting Disability Rights. Everyone in the vulnerable category have stuck by the rules by staying within the confinement of their home. Staring at the same 4 walls every single day. Their mental health suffering daily. It’s a humdrum existence. Only recently have we personally started to go out for walks but we are a long way off from feeling comfortable integrating back into society. Even during our walks people don’t social distance, common sense should prevail when you see a young boy in a wheelchair coming towards you but on most occasions it has been us frantically trying to get out of their way!

Back in 2015, the government responded to Disability Rights UK ‘No Voice Unheard, No Rights Ignored’ campaign. Here is the statement from Rt. Hon. Alistair Burt MP. Minister of State for Community and Social Care.

We want everyone to be treated with dignity and respect. People should be involved in decisions about their care and not have to take what is given to them. We must stop thinking only about the things people cannot do and help them with things they can. People need better care and support in the place they choose to live. They should only go into hospital if it is the only way to get the treatment they need. They have rights and everyone must respect these rights. This needs a big change. Services must work together to find out what people need and help them to be as independent as possible. We want to see real changes between now and 2020. I hope you will check whether national and local organisations do the things we talk about in this paper”.

Unfortunately 5 years on the need for change is still there.

I’m not really sure what our way out of this situation is at the moment and what we’re expected to do once 1st August comes around. Are we just expected to go back into society as if nothing has happened? Do we take a baby step approach? Will there be continued support from the Government? The general public will have had almost a month of ‘being back to some kind of normal’ yet come August we will have to make anxious decisions that usually were just an average everyday task. So when you’re sat in the hairdressers/barbers chair or downing that long awaited cold first pint in the pub spare a thought for the families in our position who are in need of some respite due to 19 weeks of mental and physical exhaustion. I think we’ll just have to plan our own Great Escape but it will be a while until we cross the wire to get our baseball back!

Enjoy your week and stay safe!

Kieron

100 Days Later (part 13)

An ode to the Dad joke!

As it’s Father’s Day today I thought I’d post a few Dad jokes. I’ve not had much time to sit down and write a post as the kids want my attention as it’s been my birthday week and Father’s Day (something Louise constantly reminds me of every year, sometimes they fall on the same day!). I absolutely love Tim Vine and his one liners, so I thought I’d share a few of his with you today and others that I’ve also found on the internet. If you don’t laugh at any of these then please use the nearest exit door right now!

I saw this bloke chatting-up a cheetah and I thought: ‘He’s trying to pull a fast one.

I said to the gym instructor: ‘Can you teach me to do the splits?’ He said: ‘How flexible are you?’ I said: ‘I can’t make Tuesdays.

I was at sea the other day and loads of meat floated past. It was a bit choppy.

I did a gig in a fertility clinic. I got a standing ovulation.

My son asked me to stop singing Oasis songs in public. I said maybe.

My wife is furious that our next-door neighbour has started sunbathing nude in her garden. Personally, I’m on the fence.

When the wife finds out I have replaced our bed with a trampoline… She’s going to hit the roof.

My wife said I never buy her flowers. I didn’t even know she sold flowers.

Uncle Ben has died. No more Mr Rice Guy.

I went for an interview. They said, ‘Can you perform under pressure?’ I said ‘I’m not sure about that but I can have a good crack at Bohemian Rhapsody’.

My wife told me to take the spider out instead of killing him. Went out. Had a few drinks. Nice guy. He’s a web designer.

Conjunctivitis.com – that’s a site for sore eyes.

Do you ever get that when you’re half way through eating a horse and you think to yourself, ‘I’m not as hungry as I thought I was?

I told my wife she should embrace her mistakes… She gave me a hug.

Today, my son asked, ‘Can I have a bookmark?’ and I burst into tears. 6 years old and he still doesn’t know my name is Kieron.

Been out washing the car with my son. He said ‘Dad, why don’t you use a sponge like the other dads?’

My next door neighbour worships exhaust pipes. He’s a catholic converter.

I was reading a book – ‘The History of Glue’ – I couldn’t put it down.

This bloke said to me: ‘I’m going to attack you with the neck of a guitar.’ I said: ‘Is that a fret?

I went to a Pretenders concert. It was a tribute act.

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

Have a great day and enjoy the week ahead.

Kieron

#duchDad

100 Days Later (part 12)

This coming Wednesday I’ll be 45 (Forty five) years old. I’ve spelt it out as they used to do that on the vidiprinter on Grandstand when a team scored a high amount of goals against the other team! I think it’s official confirmation that I’m middle aged, well that’s if I’m lucky enough to live until the grand old age of 90! I’m at the age where I have more hairs growing out of my ears and my nose than on my head!

As of yet I’ve not really had a midlife crisis, maybe writing the blog is the beginning of it! I’m just FIVE years away from being 50! It’s also FIFTEEN years ago since my 30th! I remember when I was 18 and first started going to the pub with my mates, we never went out that often on a Saturday night as it was the ‘oldies’ night, the average age of the people out that night probably would’ve only been 30, if that! We all have this perception of age, ‘Life begins at 40′, ’50 is the new 30’ etc. Probably for the people in these age groups the answer is yes it does but it would be interesting to know what age this generation of young adults perceive to be middle aged.

Once Mila-Rose and Alfie hit ‘Sweet Sixteen’, myself and Louise will be closer to our sixties than our fifties! They’ll probably bring their boyfriends and girlfriends home to meet us and upon leaving the new love of their life will probably ask “Why do you live with your Grandparents???”. I’m only joking and to be honest in my head I still feel as if I’m in my thirties. I remember looking at ‘older’ people when I was younger and they all dressed like Ena Sharples! They were probably only in their mid 50s but looked about 80 years old!

My Mum (she is wearing a bikini!!) and myself at Fistral Beach, Newquay

I don’t actually think I’d change too much in my life and I’m really happy where I’m at now. I remember during adolescence and in particular my late teens that I really lacked confidence in myself and how I looked, I’ve always had quite a skinny frame so I would always buying clothes about three sizes too big and wore layer upon layer to bulk myself up! When I look back at some the pictures I look like the guy in the waiting room in Beetlejuice!

First lads holiday, again in Newquay!

One thing I always remember about those times would be only having one telephone in our family home and bear in mind that mobile phones didn’t exist so if a new girl was on the scene I used to dread either having to ring them up to arrange a date or them ringing me up as the phone was in the living room! I was quite shy around girls and it was hard enough finding the courage to speak to them in the first place but having the whole conversation listened to by your Mum, Dad and Sister was even more excruciating! So I would like to issue an apology to any ex-girlfriends who I spoke to on the phone in the nineties, I wasn’t being rude or sharp it was just awkward!

21 today!!

I think by my early twenties I was starting find a bit more confidence in myself. I had worked in retail since the age of 16 and when the Trafford Centre opened in 1998, I started to work at the Levi’s store. Here I was amidst a lot of cool and confident 16-25 year olds who really brought me out of my shell. It was a real confidence booster. To this very day I’d say it’s the best job I’ve had, mainly due to the fact that it wasn’t like going to work but more like going on a night out!

The ‘skinny jeans’ era

My thirties started with a bang with a memorable trip to Dublin to celebrate! Skinny Jeans were all the rage and looking back at all those years of buying larger clothes to cover my skinny frame everything was now as tight as possible! I didn’t really worry about how I looked as I had not only grown in age but also in confidence. I would say that I really knew who I was, what I wanted from life and that lead me to getting married to my beautiful wife and having the two most adorable children.

My beautiful family!

I’ll finish with this story and I remember this really, really hot girl when I was 18/19 who used to go out in my home town of Leigh and I really fancied her. We nicknamed her Catwoman as she used to wear this catsuit on occasions, myself and my mates would purr like Austin Powers when she walked past! I used to think she was way out of my league and for years, due to the fear of rejection, I never asked her out. Almost 18 years after we first set eyes on each other, she became my Wife! It turned out she had always fancied me and always wanted me to ask her out!

The moral of that story is to not hold back as only YOU can make things happen!

People may perceive ‘older’ adulthood to be a negative experience and probably want to avoid it as it’s painful to think yourself as being old but you can still enrich your life when you’re older. Who knows us oldies may even be happier than some of the younger generation, after all we didn’t have the pressure of social media when we were young!

Have a great week,

Kieron

100 Days Later (part 11)

Hello! I hope you’ve all had an enjoyable week. I’ve decided this week to lighten the mood a little in regards to my isolation blog. As the weather has taken a turn for the worse, I thought as I’d have a bit more thinking time! As I mentioned in my last blog, I’ve been partaking in Zoom calls with my mates on a weekly basis and the last couple of weeks we’d used football as the topic of our discussion. We all choose our favourite moments from the beautiful game and discuss in great detail. We discussed overrated and underrated players of any era, George Best and Gazza fell into the overrated category for two of my mates (Feel free to discuss in the comments). My long time friend from High School, who also goes by the name of Kieron (what a great name!) sent over a WhatsApp message this week with the list of all lists that just couldn’t be ignored! So here goes…

I believe the children are our future…

Who is your favourite cartoon character and why?

It has to be He-Man and the Masters of the Universe! “By the power of Grayskull – I have the power!” was the immortal line uttered by Prince Adam as he transformed into He-Man every time he held the Power Sword. Together with his close allies, Battle Cat (or cowardly pet tiger, Cringer) and Orko. He-Man used his powers to defend Eternia from the evil forces of Skeletor! Easily the most powerful man in the universe!

Millennium Falcon spaceship

What was your favourite game/toy and why?

Star Wars without doubt. I remember going to Woolies (Woolworths) with my family when I was a kid on Saturday mornings and looking at all the Star Wars figures that I wished were in my collection. I think back then they retailed about £1.99! What a bargain! Then either Christmas 1983 or 1984, I got the Millennium Falcon spaceship, I was literally over the moon. It came with several of the elements associated with the vehicle in the film: a gaming table, gunner’s chair, training ball, even the smuggling compartment inside of which our heroes hide from the Imperials on the Death Star. It also featured a battery-operated “battle alert” sound!

Who was your first famous crush and why were they so special?

Kylie Minogue. I think she hit the UK screens in the soap opera Neighbours in 1986. I would’ve been 11 years old at the time and by the time her character, Charlene had developed away from a being tomboy so had my affection for her. I wasn’t much into her music but I certainly made sure I watched her pop videos! In my opinion, she’s still one of the most beautiful women in the world today.

What’s your favourite kids TV show and why?

Jonny Briggs. A few mentions for Grange Hill, Murphy’s Mob, Seaview, Jossy’s Giants but my favourite was Jonny Briggs. It was a BBC kitchen sink drama that revolved around the exploits of a young boy, his pet dog, Razzle, and his eccentric family members: Mam and Dad, older sister ‘Our’ Rita and older brothers Albert and Humph. It was a real Northern working class programme. I think it was filmed in Bradford. The theme tune was brilliant as well!

You’re History, no good to me…..

If you could have witnessed any event of any era, what would it be and why?

Bobby Moore with the Jules Rimet trophy

England v West Germany 1966 World Cup Final. Yes I know you’re going to think WHY have you a football match over other major historical events but I’m a massive football fan and one day I wish to see my home nation win a major trophy. Unfortunately so far in my lifetime we’ve only got to the semi-finals but can you just imagine what it must’ve felt like being a part of the euphoria of the whole country uniting on that day in July to see England lift the most prestigious trophy in world football. Imagine the celebrations afterwards too in the swinging sixties!

What do you wish you’d have invented and why?

Instant Gene Editing Technology. An instant technology that would facilitate gene editing from birth. Our son Alfie and all the families affected by Duchenne Muscular Dystrophy would have all the pain and heartache taken away from them. I don’t really need to say anymore.

Which historical figure is the greatest and why?

John Winston Lennon. I’m not saying he’s THE greatest in history. We could really do with a leader like Sir Winston Churchill at this very moment in time. During my research for this I discovered that in a poll of 100 Great Britons in 2002, TV, film and theatre actor, Michael Crawford came 17th on the list! He has to be one of the most famous, successful, influential, covered and admired pop artists of all time. It’s my personal choice as I love music, art and have a new found love for writing so he ticks all the boxes for me! To think that his life was so tragically ended when he was just 40 years old.

That’s Entertainment…

Partners in crime, Vincent Vega and Jules Winnfield

Favourite film and why?

Pulp Fiction It was made in 1994, I was 19 and for me it was a groundbreaking in every way. A film like this had never ever been seen before. A brilliantly written and incomprehensibly cool film that has to be the most quotable crime movie of all time. The performances from Uma Thurman, Samuel L. Jackson and John Travolta were just amazing. The soundtrack was also brilliant. What more could you ask for?

Favourite TV Theme?

Dennis Waterman – I Could Be So Good For You The theme tune to 1980’s TV show Minder, a British comedy-drama series about the London criminal underworld. It starred the late great George Cole as less-than-honest businessman, Arthur Daley and Dennis Waterman as his bodyguard, former boxer Terry McCann. I remember it used to air on Monday night’s at 9pm and we were allowed to stay up and watch it!

Favourite Comedian and why?

Frank Skinner. Mainly for his quick wit and dry sense of humour. He remind’s me a bit of myself! I read his autobiography in 2002 whilst on holiday. He was expelled from school at 16 and had a serious drink problem from the age of 14, but managed to go teetotal in 1987. He really turned his life around and went onto create Fantasy Football League in the 90s. His comedy back then was a groundbreaking mix of laddish and philosophical humour. The Frank Skinner Show also brought a famous moment of him dancing in dodgy white Y-Fronts to Venga Boys which still makes me laugh to this day!

A film of your life is made, who plays you and why?

Christian Slater. The reason being is that back in my younger days, I used to get told all the time that I looked like him. I think it was the eyes more than anything, I never saw the resemblance myself so for that reason he’s taking the lead role! I also used to get Tony Mortimer from East 17 a lot too! Alright, Alright, everything’s gonna be alright!

If you could go to a concert and stand at the side of the stage of any artist, who is it and why?

The Beatles at Empire Theatre, Liverpool, December 7th, 1963 Aside from standing at the side of the stage at the likes of a Robbie Williams, Craig David, James Blunt gig and telling them not to bother, I think it would have to be The Beatles. Ideally it would be at The Cavern but I don’t think there would be room at the side of the stage! I’d have loved to have experienced the height of Beatlemania and just the 60’s in general. The music and the fashion suit me down to the ground. I think the Swinging Sixties were very similar to the Nineties in some respects. I’m very gracious that I was around during the 90s Britpop era and saw Oasis countless times in the process including at Maine Road and Knebworth in 1996. The latter event almost two and a half million applied for tickets!

Most famous person you have shook hands with and how did it come about?

During my retail days I used to work at the Levi’s store at the Trafford Centre. It was the late 1990s so the selfie didn’t really exist as we were in the days of the then groundbreaking Nokia 3210 mobile phones. I remember Victoria Beckham ringing up the store to say that they’d be visiting the store in the afternoon and could we put aside some jeans for her try on. A few hours later in walked the Beckham’s and their entourage. No handshake but a worthy mention as we did exchange nods! We used to get quite a few celebs in the store, mainly footballers, musicians and soap stars. I have shook hands with Ian Wright, I asked him if he fancied playing for our Levi stores 5-a-side team that evening. He politely declined. I also met Paul Arthurs aka Bonehead from Oasis. He’d not long left the band and I enjoyed a good chat with him whilst trying to find him a decent pair of bootcuts! The one other that springs to mind is when I worked at Schuch in Manchester, Anne Kirkbride who played Deidre Barlow in Coronation Street came in to the store. The staff were mainly students and the girl who was serving her came over to me and said “Can you believe Deidre Barlow is trying on white stilettos!”. Still makes me laugh to this day!

Have you ever been on TV, Radio or Stage and what did you do?

Yes I have been on TV and Radio and they both came during this lockdown period. For those of you who are new to my Duch Dad blog, myself and my family were on our local regional news programme, Granada Reports. As Alfie’s 6th birthday party was cancelled due to us self isolating, I did a social media Duchenne Awareness campaign to get celebrities to wish Alfie a happy birthday. We had the likes of James Corden, Ant & Dec, Jodie Whittaker, Sir Chris Hoy, David Tennant, Catherine Tate and Matthew McNulty to name but a few! A few weeks later I then appeared on BBC Radio Manchester to discuss lockdown and shielding. Check out part 4 and part 5 of my blog to read the whole story!

Two for Tea

1) You are on death row, what’s your last meal and why?

StarterMinestrone Soup. When we were on our honeymoon in Florida in 2012, we went to the Olive Garden Restaurant on International Drive. I had the best bowl of Minestrone Soup I’ve ever tasted. Fresh vegetables, beans and pasta in a light tomato broth.

Main CourseSlow Cooked Lamb Shanks on a bed of Mashed Potato, Green Beans and Red Wine gravy. I think I’m just going for hearty comfort food. You can’t beat slow cooked succulent lamb just falling off the bone. I can’t say anymore as it’s making me hungry thinking about it!

DessertChocolate Sponge with Custard. The ultimate comfort food dessert. I always remember this being a favourite of mine at primary school and still to this day it’s my favourite. As I’m on death row I’m going to ask for unlimited custard!!

Dinner party inviting 3 famous guests (dead or alive), who are they and why?

Nigella Lawson – Not only would she host the ultimate dinner party, she’s also the undisputed queen of the food-based double entendre! It wouldn’t just be the food that was spicy and saucy! The dulcet tone of her voice makes her very engaging.

Frank Skinner – Working class background, quick witted, loves football, plays the ukulele and boy would he lap up Nigella’s double entendres! I imagine he’d ask some great questions too which would lead to some great discussions. He could also host a Dinner Party version of Room 101! (Maybe the theme of my next blog?)

Amy Winehouse – Immediately distinctive, both in terms of music and style, with her winged eyeliner, beehive hair and collection of tattoos and that voice. Imagine her just getting up to sing a few numbers after dinner. “She could bring songs to life like no other,” wrote an English journalist after her death. “But she was unable to live her own life.”

You may also note that all of the above have had addiction issues in the past. That is not my reasoning of choice, it’s purely coincidence! Maybe Frank could shed some light on how to tackle their addiction and help the two damsels in distress? If it’s not working then Nigella and Amy could pop off to the ladies whilst Frank and myself talk footy!!

So that’s it! I’d say that was the most challenging blog I’ve written for a while as I’ve had to delve deep into the my memory bank! Please feel free to devise and share your own selections in the comments. Remember there is no right or wrong answer as they are your own personal choices.

Stay Safe!

Kieron

#duchDad

100 Days Later (part 10)

You may notice that the blog title has changed! 84 Days Later has now become 100 Days Later due to the Government extending shielding until 30th June. A lot of mixed messages again from Boris and co this past week and I feel a lot of the announcements have been to deflect the attention from Dominic Cummings. Let’s give the public something back and put them even more at risk! As of yesterday (1st June) most of the general public returned to a sense of normality after their ‘lockdown’ period. You can now have up to 6 visitors in your garden but if you’re a family of 4 does that mean you can only have 2 visitors? They never really quite explain it in detail do they? The lack of clarity strikes again! What’s also increasingly frustrating is the amount of people that continue to flout the rules, the announcement was made on Thursday 27th May and due to the sunny weather we could hear groups of people happily gathering in other peoples gardens! Hey, I’m all for people having a good time but when you’ve been confined in your own home for 10 weeks you can’t help but feel a bit pissed off! You only had to wait a few days!!!!

Haircut One Hundred

Locks Down Barber Shop

A few ‘firsts’ have happened in the house this past week. Alfie has very thick hair and like mine as a child it doesn’t grow long as such, it just grows thicker and thicker. My nickname for it as a child was ‘Microphone Head’. It was time to call in the Barber. The Barber being me! A quick call to my Dad to borrow his hair clippers and then it was time for action. The Mop Top was about to become a Cropped Top. It took a while to get through the mound of hair on Alfie’s head but as you can see in the pictures above I think I did an alright job! Obviously once Alfie was all neat and tidy he immediately moved onto me having it done! Now I’ve shaved my head twice in the past, the first time was 20 years ago when David Beckham made it look cool (I had a number 1 all over!) and the second time was when I thought having blonde highlights in my hair would really suit me. They didn’t and I subsequently went back to the hairdresser the same day and had it all shaved off! (Thanks to my sister, Janine for reminding me of that one!) Anyway, I had a number 4 all over which then went to a Number 3 the next day as it didn’t look quite right! Now when I was was shaving it, I envisaged mine to look like Alfie’s. A perfect hairline and golden brown hair, unfortunately I had to make do with more grey hair with a slightly receded hairline. More George Clooney these days than David Beckham!

Hi-de-Hi!

Hello Campers!

Well as we won’t be going on holiday this year, we decided to bring it to our back garden. We had a video chat last week with fellow Duchenne parents, Bernie and Rachel and we got onto the discussion of holidays. They mentioned they had a tent which they hadn’t used for a good few years and we were welcome to borrow it so we could have an adventure. Bernie very kindly drove over on Sunday morning from Blackburn and dropped it off (at a very safe distance). By Sunday afternoon, our tent was all set up and our camping adventure commenced! After the Burgers, Fries, Chicken Kebabs and snacks came lots of bedtime stories followed by going to sleep on the first night with Alfie waking up at 4am saying he was cold! Back inside to the comfort of our own beds! The following evening was much more successful and we managed to sleep through as extra layers and duvets were provided by the camp site!!

Zoom calls

I have found the Zoom calls to be a great stress release and every Wednesday I meet up with my mates and usually we partake in a weekly Facebook quiz. We then have a good catch up and a moan about the previous week! Just to break it up, we decided to follow the lead of Lineker, Shearer and Wright with their Match of the Day Top Ten’s and host a football debate. I compiled a list of ‘Favourite Football Moments’ for them to choose from. We all donned our retro footy shirts and each selected (and discussed) our selections of favourites ie player, goal, match, kit etc. It was so successful that we’ve decided to carry it on this week. The first weeks list was as follows so please feel free to join in by leaving your comments on the blog page or in the comments on the social media page. I know football isn’t everyone’s topic of discussion but you could choose your Top Ten’s in Music, Films, Books etc.

Choose your favourites

Well that’s about it for me this week. Enjoy the rest of your week.

Stay wherever and be whatever you want to be!!!!

Kieron

#duchDad

84 Days Later (part 9)

A bit late to the party this week, almost as late as Dominic Cummings appearing at a press conference! The sheer arrogance of that man is just unbelievable! Only a short one this week as I’ve not really been ‘in the zone’. So what have we learned this week aside from one rule for one and one for another?

Shielding

Unfortunately it appears the Government have just put the extremely vulnerable all in the same pot and cast them aside by telling them to just hide away indefinitely. No guidance. No support. No consideration for the people themselves, their families/carers or most importantly, their wellbeing.

They’re quite happy to announce unlimited exercise for the public but as I’ve said previously judging by everyones posts on social media they’ve been doing this since day one! Why didn’t they announce an hours exercise a day for the families who are shielding a child/adult? Let them go for some fresh air without the stress of the possibility of bumping into someone.

The last 9 weeks have really taken its toll both mentally and physically on our family and others we have been in touch with. It’s a complete shambles the way they’ve treated the people in the vulnerable category. Basically the Government have washed their hands of them and are leaving it up to us to make the decision so they don’t cop the blame! It’s a disgrace.

Shops to reopen

To top it all off they announced yesterday (Monday) that some shops are to open from June 1st followed by all non essential shops on June 15th. Is this the place where we are to go and meet up with our families? How is it that we can all mix under one roof in an air conditioned facility circulating god knows how many germs but yet still can’t have our families around to our homes? Totally incompetent!

Mental Health Awareness

Last week I was sent a link by my good friend, Bernie. He’s a fellow ‘Duchenne Dad’ and both he and his wife, Rachel have been very supportive to us since we first met up with them at a Duchenne UK conference last year. The link was to a Mental Health Awareness course that focuses on the importance of Sport and Physical Activity. The programme aims to increase your awareness of mental health and provides you with a toolkit to build resilience, enable and support mental health recovery and tackle stigma and discrimination. I’m almost a quarter of the way through it and it’s been very interesting so far so I’ll be sharing my findings with you all in future blogs.

Walking back to happiness?

As I mentioned in my last blog, Louise spoke to Alfie’s Consultant at Manchester Children’s Hospital in regards to the way forward for us once lockdown ends. She suggested that as long as we followed the strict social distancing guidelines then there would be no reason why we couldn’t go for a short walk. I have to say on doing this the first walk around the block did feel quite strange and I have to admit the anxiety levels were high. Now you wouldn’t think a simple everyday thing would create such stress but for me personally it did. I think more for the reason of making sure Alfie was fully protected and making sure that no one came near him. The not knowing who was round the corner and if they were going to adhere to the social distancing. On one of the short walks last week, I took Alfie out in his wheelchair, a person was approaching us on the pavement and didn’t look like they were going to cross the road. On the opposite side, a family were sat outside on their garden wall! In the end, I had to go into the road to make sure the social distance was adhered! Dilemmas like this make the simplest of things all the more stressful. Thankfully where we live the street isn’t overly busy with cars but I’m not sure if that was just pure ignorance or the fact that the person hasn’t fully got used to the ‘new normal’ yet.

Enjoy the rest of your week and remember…

STAY ALERT. GO FOR A DRIVE. CHECK YOUR EYESIGHT.

Kieron

#duchDad

84 Days Later (part 8)

Untied Kingdom

You may think that I have made an uncharacteristic typo in my heading but I can assure I have not. I personally believe that we are no longer a United Kingdom in our stance on Coronavirus. Boris Johnson and his Government have loosened England’s laces away from Scotland, Ireland and Wales in how we move forward in protecting a once United Kingdom against this pandemic. I’m not quite sure what the Government’s thinking was in changing from ‘Stay at Home’ to ‘Stay Alert’, it’s almost as if though they are enforcing a cull. How can you possibly ‘Stay Alert’ against a deadly virus? The original ‘Stay at Home’ message is understandable and quite simply telling us as a nation to do exactly that! It’s also very conflicting that the Chancellor, Rishi Sunak announced that furlough would be extended until the end of October 2020? It’s all very conflicting, I suppose only time will tell.

Lockdown

As you all know we’ve been in complete isolation since the 21st March. We are trapped in our house and it’s surroundings. Thankfully the weather and the garden have been our saving grace. The gnawing anxiety associated with being in physical isolation is emotionally draining. I’m not sure how much longer we can cope as these last two weeks have been incredibly tough. Having been totally locked in, myself and Louise are currently like ships that pass in the night. We’re worn out, constantly anxious, overwhelmed and in desperate need of a break, not just from the kids but from each other! There’s literally been no escape. We usually rely on our parents for our respite but three out of four of them fall into the over 70’s category so I’m not quite sure how that will work out once lockdown ends for us! This prompted Louise to contact Alfie’s Consultant at Manchester Children’s Hospital, she has given us permission to go out for short walks around the perimeters of where we live. She knows we’re sensible enough to observe social distancing, we just have to be careful of others who maybe ignore that fact. After all you can be the safest driver on the road but there is always one careless driver who will crash into you. I’ll update you all on our parole status in the next blog.

Home schooling

We’re finding it even more difficult to get Mila-Rose and Alfie motivated to do even the slightest bit of school work. People say it’s ok they’ll catch up but being with Alfie these last 2 months has only highlighted the fact even more how much more support and assistance he requires in regards to his learning and sometimes challenging behaviour. We’re their parents not their teacher, we’re not equipped with the skills or the tools a teacher possesses. I’ll give you an example, Mila-Rose and Alfie’s teacher this week very kindly did a video call with them to catch up and speak with them about their school work. Honestly they sat there like butter wouldn’t melt, like perfect little children! Two minutes after the call ended they were both a complete pain in the arse again! It’s a desperately challenging situation for any parent but even more so for parents in a similar position to ourselves.

There are around 1.1 million children in the UK with a disability. In England, there are nearly 87,000 children and young people with life-limiting or life-threatening conditions. I would say that a high percentage of their parents are on the brink of collapse and that they urgently need support as they are at the point of burnout. I do hope the Government have taken this into consideration once we’re all out of lockdown as a lot of families of disabled children are going to require increased mental health support on the part of both their children and themselves.

BBC Radio Manchester interview

On Tuesday morning I was invited to do a short interview with Becky Want on her BBC Radio Manchester Breakfast Show. Prior to the interview, I had spoken with the Producer of the show in regards to the content of the interview and she said Becky would just want to know about Alfie’s condition, Action4Alfie and about my achievements from the #HappyBirthdayAlfie social media campaign. As it was going out live to listeners across Greater Manchester I was nervous enough already! Take a listen at the link below and you’ll hear that the majority of the interview was about lockdown and shielding! I think I handled it well enough, after all I’ve watched enough politicians swerve questions over the past couple of months!

My Interview with Becky Want on BBC Radio Manchester

Leighnix Nights

This Saturday (16th May 2020) we should have been hosting our joint Leighnix Nights fundraiser with Two Hips, One Knee. Sadly we had to postpone the event due to the Coronavirus pandemic. Our good friend, Rosey McNally has Avascular necrosis (AVN), a life crippling disease. In short AVN is a disease that stops blood flowing to your joints and in turn means that the bone slowly deteriorates and eventually dies. Despite this diagnosis she is incredibly strong, full of life and is one the most positive and kindest people you will ever meet. Earlier this year we came together and planned Leighnix Nights, we completely sold out of tickets to this event within 5 days of them going on sale! We’re all absolutely devastated it couldn’t happen but everyone’s safety has to come first. In the words of the man himself, Brian Potter… We had a dream, people, we had a dream! Bigger, better, faster, stronger, rising from the ashes. Leighnix from the Flames! Watch this space!

Enjoy your weekend!

STAY HOME. STAY SAFE. KEEP YOUR DISTANCE.

Kieron

#duchDad

84 Days Later (part 7)

Defying the odds?

On 7th May 2016, Leicester City played their final home game of the season against Everton. After that game they received the English Premier League trophy in a season which they defied almost uncertain odds. In the stadium that day there were 32,140 people. Picture in your head the football stadium pictured above packed to the rafters. The harsh reality today is that almost the same amount of people in the stadium that day have now lost their lives in the UK to Coronavirus. Alarmingly, a percentage of people in the UK continued to ignore the Government’s advice this weekend whilst celebrating VE Day and still think they can defy the odds that Coronavirus won’t affect themselves or their families. I’ve seen clips online of large mass gatherings dancing the conga and as I’m writing this a whole street doing Oops Up Side Your Head! In 2 weeks or so those people may pay the consequences and unfortunately so might many other innocent people.

Close to home

For us personally, it’s getting very close to home as an elderly couple who live just 3 doors down on our street have both had Coronavirus, thankfully they have both made a full recovery. 10 weeks on from the first reported death in the UK, it’s still here and it’s not going to go away anytime soon. If the way people have ignored the lockdown this weekend then in another 10 weeks we maybe looking at a death toll that would fill Old Trafford (approx 75,000).

In this period of time, the entire world has had a glimpse of what it feels like to be a patient and parent with a terminal diagnosis—to be told potentially there are no tests, no treatments, and no answers. The Coronavirus response shows how much more we can do to change the system and fight against terminal illnesses. Now perhaps people will understand a little what having a child with Duchenne feels like. c/o Raising Reed Facebook post

Frustration

I have to say this week has been the toughest of all the weeks we’ve been in self isolation. It now feels as if there is no escape. In fact there isn’t. You personally maybe self isolating but you have the option of leaving your property to go out and do a bit of exercise or call at the supermarket. I can imagine it’s quite literally a breath of fresh air to get away from your partner or a break from the kids constantly screaming at you for a snack! We all need that space! Unfortunately we don’t have that kind of luxury and the frustration of this has definitely crept in this week. Self isolation has pushed many of us to spend more time with our families than ever before. We’ve had to find the solution as to how we work, parent, home school and simply get on as we move through the same rooms all day long. This would quickly deteriorate even the most stable of relationships! A simple fix to this problem today was quite simply the warm weather and a hosepipe sprinkler! It’s not always that simple!

Choose your battles wisely

On Tuesday evening, we endured another of Alfie’s night time behavioural meltdowns and it went on for almost 3 hours. A small trigger of simply not wanting to get into bed at 7.30pm resulted in him only going to sleep at 10pm that evening thus leaving us both physically and mentally exhausted. So much so I retired to bed as I literally had no energy left.

Problematic behaviours are quite common in all preschool children, and boys with DMD are no different. However, young boys with DMD may have more difficulty with impulsivity and emotional control than other children their age. They are also more likely to be rigid and inflexible in their thinking, which can result in noncompliance or arguing. They may have difficulty making transitions. They may also be taking steroid medication with side effects that can impact their behaviour, such as making them more emotional and active than normal. c/o Parent Project MD

Unfortunately, it continued into the next morning for over an hour as I took a stand against his behaviour and took away the TV remote control. A battle I was never really going to win. This prompted Louise to speak to an educational expert (whose son also has Duchenne) a couple days after this latest incident and he stated that in this scenario you have to choose your battles wisely. His advice for the future is to take Alfie out of the situation, maybe downstairs for a while to calm him down then once he’s settled down take him back up to bed. Wise words when you’re not in ‘the moment’ but when you’re physically and mentally challenged after a long exhausting day it’s difficult to know what to do for the best. For us as parents these are all learning curves and almost the same as having a newborn baby, everyday is different and we’ll come up against a new challenge daily.

New logo

I decided to give the blog a bit of a spring clean this week along with a new logo. The ‘d’ on the left representing Alfie and the ‘D’ on the right representing myself. I’ve also set up a dedicated Facebook page to the blog so please click the link and give it a thumbs up. Thank you.

BBC Radio Manchester interview

On Tuesday 12th May at approx 8.15am, I’ll be doing a ‘live’ interview with Becky Want on BBC Radio Manchester Breakfast Show discussing my recent Action4Alfie social media campaign. I’m not quite sure what to expect as I’ve never done a live radio interview before! Wish me luck!

Well that’s almost 7 weeks isolation completed and we’ll just have to wait and see what Boris announces in regards to lockdown later today.

Stay Home. Stay Safe. Stay Distant.

Kieron

#DuchDad

84 Days Later (part 6)

Breakfast of Champions

It’s Sunday morning, the one day I try to keep as routined as possible to allow myself time to blog my thoughts and clear my head for the new week ahead. A nice breakfast to set me up consists of grapes, sliced peaches and yoghurt topped with granola. Washed down with a nice cup of builders tea! Ahhhh!

In the past, the previous day used to be so pleasurable. The first full day of the weekend and spending quality time with the family. I don’t know about you but now Saturday’s just seem to draaaaaaaggggggg, so much so that during this lockdown it’s now my least favourite day of the week!

Half Time

We’re now approaching the half way point of our self isolation period and I’ve been told on a few occasions this week that life on the outside is slowly getting back to normal. More traffic on the roads??? More people out shopping??? Aside from the idiotic selfless people that had previously ignored all the advice about staying at home, I think we should be asking the question why this week the government chose to announce that we were past the peak of the pandemic??? Are they really trying to encourage a second wave of Coronavirus? Personally, I think this announcement will encourage more people to think we’re over the worst and that it’s now ok to go about as normal with our everyday lives. We still don’t have any clarity on what happens after the 12 week period in regards to protecting the vulnerable like Alfie. Coronavirus isn’t just going to disappear overnight is it? What’s to say that our immune systems aren’t lower than normal after the full 3 months isolation? After all we’ll have had no contact with anyone during that period of time. Are we just to be expected to just return to normal as if nothing has happened? I could go on but we’ll just get into the politics side of things and that’s a subject I’m choosing to ignore for the time being due to it being quite a prominent subject the last couple of weeks.

#HappyBirthdayAlfie

Last week was quite a comedown after the previous few weeks antics. I can only describe this past week as feeling like the day after your wedding day. You put all the time and effort into planning this one special day, the day arrives and before you know it’s gone in a flash! Like a wedding though, we have special memories that have been created and ones that will last forever (unless you’re now divorced!!), not just for us but also for our family and friends. I think probably the reality of all this will only really sink in when it appears next year on my Facebook memories when Alfie’s birthday comes round again! It was quite funny the other day as Alfie was watching James Corden’s Carpool Karaoke on YouTube, his ‘passenger’ was Ed Sheeran. Alfie turned to me and innocently said “Daddy, is he one of your friends too?!!” Erm, no Alfie but just wait whilst I contact his agent, I’ll see what I can do!!

Joe.co.uk

On Monday I was contacted by journalist, Nooruddean Choudry from Joe.co.uk in regards to him doing a feature for their Twitter page about the #HappyBirthdayAlfie campaign. He was such a nice genuine guy and really made me feel at ease during the Skype interview. I spoke to him in regards to the campaign itself, why it’s important for people to still #StayHomeSaveLives and also about Alfie’s condition. It was a 30 minute interview cut down to 3 minutes but I did speak about the positive response Alfie has had to his steroid treatment, the negative side was yet to come…

Steroid treatment

Alfie takes 10mg of prednisolone daily and it’s made such a massive difference to how he goes about his approach to the simple everyday things we all take for granted. Unfortunately this week we also saw the negative side effects of the steroids, they can cause behavioural problems. In the past we used to experience quite a lot of really bad meltdowns in particular before bedtime. We introduced Melatonin to Alfie’s bedtime routine about 3/4 months ago. It helps control his sleep pattern. It makes him fall asleep quicker and less likely to wake up during the night. Unfortunately we missed his bedtime ‘slot’ on Wednesday by about 10 minutes (that’s all it takes) and we experienced one of his meltdowns. Now I know you’re going to think that all kids have meltdowns and they do, some worse so than others but with Alfie he becomes a different animal. Our happy go lucky loving little boy disappears in a flash. It’s almost as though he loses control of himself and it triggers a switch. It took us both an hour and a half to eventually settle him down and get him to sleep. We were both exhausted but then unfortunately we had to go through it all again the next morning for about an hour just because he didn’t want to have a bath. Once he’s calmed down he’s back to his loving little self. During these times you have to just simply ride the storm. When you think back to the times before he took the steroids and couldn’t walk 3 strides without his legs giving way or not being able to climb up one step of the stairs. At this moment in time the positives really do outweigh the negatives with the steroids but during the meltdown moments you really do feel like Dr Victor Frankenstein.

May Goals

So after quite a positive April, I’ve decided to set myself some goals for May. One of those is to try and promote my blog on social media. I really do enjoy writing it and as I’ve said previously it’s my coping mechanism in so many ways. I’ve had so much positive feedback from family and friends so please if you can continue to share it with your followers on social media it would be a great help. Who knows you may even be helping someone else in turn. I’m also going to continue to raise as much Duchenne awareness through the Action4Alfie Facebook and Twitter pages, so CELEBS BEWARE I may be back stalking you in the near future to encourage people to STAY AT HOME and protect the vulnerable.

My final goal is to aim high! The future you see, is the person you will be!

Have a great week! Stay Home, Stay Safe and aim high!

Kieron #DuchDad

Please follow (and share) our Action4Alfie social media pages…

Action4Alfie (@Action4Alfie) | Twitter

https://www.facebook.com/Action4Alfie

84 Days Later (part 5)

Well what a week that was! If you’d have said to me at the beginning of 2020 that by mid-March we’d in full Coronavirus lockdown and unable to go past the front gate I’d have brushed it off. If someone then said four weeks into that lockdown you and your family would be on Granada Reports (twice in one week including once ‘LIVE’ from your dining room!!) and receiving birthday messages to Alfie from Ant & Dec, James Corden, Hugh Jackman and Stephen Mulhern etc then I’d have laughed in your face! Well it did actually happen and this is how it all came together…

Here’s what I wrote in part 2 of my 84 Days Later blog!

Alfie’s 6th Birthday

Well! If you read the transcript above from the second of my Isolation blogs, you’ll know that’s when it all began but it started very slowly. In my last blog, Be Like Bambo, came my Bruce Lee moment (as it’s now known!). I bent with the wind and boy did it work! My sister, Janine had also been emailing many celebrities such as Joe Wicks, Paul Hollywood etc but she’d also contacted our regional news programme, Granada Reports.

Breakthrough

Victoria Grimes, a TV reporter from Granada Reports (or Grandad Reports as Mila-Rose and Alfie call it!) contacted her to discuss the email she’d sent and she said it’s the kind of story that would bring a smile to peoples faces during these dark times. We had our first conversation with Victoria on Wednesday 15th April to see which celebrities Alfie (and Mila-Rose) liked. Ant & Dec were mentioned as well as Stephen Mulhern, Mr Poppy from Nativity. James Corden was also but mentioned but as he was in L.A. it probably was a bridge too far. At that point though we had more chance of getting a message from Archie the Donkey from Nativity!

Mr Poppy (right) with Nativity 2 co star, David Tennant

w/c Monday 20th April

On Monday, we discussed with Victoria the details of the Skype interview that was planned for Wednesday. I took a few shots of Mila-Rose and Alfie in their Toy Story outfits that would be used in the report. These were sent to Victoria to use in the edit in the hope that maybe a few regional celebs would see this and maybe do a message. At that point she’d been in touch with the ITV press office who contacted the likes of Ant & Dec, Stephen Mulhern, members of the Nativity cast etc. They were still a long shot.

By Tuesday, Victoria had unbelievably secured messages from Stephen Mulhern (which she said was very special) and Catherine Tate. Everything seemed to be coming together. She’d also managed to get through to Ant & Dec’s agent but she pointed out that it wasn’t a given. As things were moving along, it was still in the back of my mind in regards to James Corden. Alfie was watching him more and more that week on YouTube, I’m not quite sure he fully understands his pranks but he just laughs and laughs at him! That day we also received an amazing message from all the players and coaching staff at Leigh Centurions, it was arranged by our good friend and Alfie’s mate, Gregg McNally or Greggles as Mila-Rose and Alfie refer him as! I honestly couldn’t get the grit out of my eye after watching that video!

Wednesday came and by lunchtime we’d done our Skype interview with Victoria. It was very funny, as we now knew she’d secured Stephen Mulhern’s message she was trying to prompt Alfie into talking about him and his show, In for a Penny. Firstly, by asking him what his favourite TV show was, Ant & Dec he replied! Same again having secured Catherine Tate, she asked what his favourite film was aside from Toy Story – he replied with PlayMobil – The Movie! You couldn’t make it up! During the Skype interview, I received an email notification from Marc Wootton’s agent. We now had a message from Mr Poppy from Nativity!

By Thursday morning I was on the phone to Fulwell73, the agency of James Corden. I was now confident we could get something (I think Victoria also had the same feeling as she said she’d sent an email to Hugh Jackman’s agent!). I had also sent a tweet to James Corden but I wasn’t that confident of him seeing that as he has well over 10 million followers on Twitter! I messaged Matthew McNulty to let him know I’d contacted Fulwell73. He replied to say that he’d text one of his mates who was in Gavin and Stacey, an actor by the name of Andy Knott. We were now as Matthew said “attacking him from all sides”. Then at 5.07pm came the message of all messages! I pressed play on the WhatsApp video message. the sound of a male voice singing Happy Birthday and the camera panning round to reveal… JAMES CORDEN!!!!! WTF!!! I couldn’t stop smiling, inside and out. A sense of just pure joy! I immediately ran upstairs to show Louise, we both looked at each other in shock but the feeling was just amazing! I just wanted to show Mila-Rose and Alfie there and then to see their reaction but that would just spoil the whole surprise. That evening everything just snowballed, we started to get messages from footballers Emile Heskey, Jermaine Jenas, Robbie Savage, Robbie Fowler, Jason McAteer, Adam Lallana, Leon Osman and Chris Kirkland. All but one of these were courtesy of our good friend, Gail Ashton, she had kindly fundraised for Alfie in the past. Her brother-in-laws brother is ex-Liverpool player, Stephen Warnock. He had brilliantly rallied the troops to get pull all these messages together. We have amazing friends who are just so kind and will always go out of their way to help. That evening we also had a call from Victoria, we would be on Granada Reports on Friday – LIVE!

The moment we received James Corden’s message!

Friday came and the nerves were jangling! We were going to be on live TV, God knows what Alfie would come out with! At lunchtime the line up was fully complete, Victoria had got the messages from Ant & Dec! We now had the Birthday Dream Team! Just 4 weeks ago, we were worrying how we were going to tell Alfie his Toy Story birthday party was not only cancelled but he also wouldn’t be able to celebrate it with all his family and friends. Now he would be on live TV having celebrities wishing him a Happy 6th Birthday! We went live and Alfie received messages from James Corden, Ant & Dec, Mr Poppy, Catherine Tate, Laura Tobin, Charlotte Hawkins, Ben Shephard, a personal message from Hugh Jackman and Stephen Mulhern. In his message, Stephen took it to another level and invited Mila-Rose and Alfie to have a FaceTime call to play the Stopwatch game! So so surreal. Everything was wrapped up and after the show had finished Victoria suggested we watched it back. There was a 10 second delay on us watching it so we had to mute the TV so we could switch back to face the camera. Also, Mila-Rose and Alfie were so ecstatic we didn’t really hear any of the messages due to their screams of joy and excitement! We watched it back and I could feel the emotion getting to me, by the time the James Corden message was on the screen I’d left the room as I was in bits. A mixture of joy, relief, emotion and pleasure had hit me all at once. 4 weeks of putting this together and I’d exceeded all my expectations and more. I looked across at Victoria and she just said I want to give you a great big hug but as she and Simon, the cameraman were outside on the patio they were unable to enter the house. I just about managed to pulled myself together to make sure Mila-Rose and Alfie didn’t see me trying to get the grit out of my eye once again!

Alfie’s actual birthday!

This was almost as surreal as the previous few days! We were up at 5am as Mila-Rose and Alfie were so excited! Presents were opened, lots of food/sweets were consumed and we even had a little street party thanks to a visit from Louby Lou! Alfie then had a virtual party with our family and friends, he absolutely loved it! During the party I had a phone call from a number I didn’t recognise, I rang it back later it was only Stephen Mulhern! What a lovely guy and true to his word! I explained that Alfie had been up since 5am and had a lot of excitement the last few days and he just said I’ll FaceTime you whenever is best for you. He didn’t have to do that but he did and we played the Stopwatch game on Sunday morning. He was just amazing with Mila-Rose and Alfie! A real down to earth guy who just wanted to do something special for our family.

Mila-Rose’s winning moment during the Stopwatch game!

I’m so proud of what I’ve achieved and I’ve given our family and friends a memory that will definitely last forever. From the moment of Alfie’s diagnosis, my/our aim has been to try and make the worst case scenario into a positive. My main target for this project was to first and foremost make Alfie’s 6th birthday as special as possible and with the help of our fantastic family and friends we’ve achieved that. I also wanted to raise awareness of his condition, Duchenne Muscular Dystrophy and given one phone I’ve had already this week it looks like that could well be achieved in the coming days. I’m not a medical expert, I won’t ever personally ever be able to find a cure. My aim when I started Action4Alfie was to make sure people knew about DMD and that no parent went through what we went through at the time of diagnosis. If just one of these high profile celebs can stick with us and maybe help in anyway then I’m sure someone of great importance may just stand up and take note. So that’s about it really, I know I’ve gone on a bit but this blog is now documented for both Mila-Rose and Alfie to look back on in years to come and if someone asks them what did you they do during the Coronavirus lockdown of 2020. They’ll say “Well, let me tell you a little story…”

Stay Home. Stay Safe and try to create something memorable this week!

Kieron

#DuchDad