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 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 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 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

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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

84 Days Later (part 4)

Notice that the stiffest tree is most easily cracked, while the bamboo or willow survives by bending with the wind.” Bruce Lee

This quote from Bruce Lee has been my inspiration this week. It came up on my CALM app during one of my meditation sessions. We are all guilty of thinking too much. Scared of failure that we spend our lives trying to approach a problem from just the right angle. Bruce Lee obviously believed in just cracking on. Not by being reckless, but coming out of your comfort zone and trying to make the best of a situation at hand.

Bamboo is quite incredible. It grows very fast particularly during the rainy season with much of the growth occurring underground. It may not look as impressive as the thick oak tree, yet it can withstand the harsh extremes of cold and hot. Most notably, it remains firmly rooted in the ground as it sways gently in the wind. Even if it seems to be bent over under the weight of bad weather, it usually pops back upright. So, be like bamboo. In your professional and personal life, choose your battles wisely. Compromise when it doesn’t go against your core beliefs. Allow for the growth to happen under the surface. If there is a lot of pressure, pause in order to not break. Whether it seems like a breeze or a storm, flow with situations as they change. Constantly assess new information as it comes in. Stay grounded in your values while understanding that flexibility is a sign of strength. I did a little research into the quote and found the above transcript on http://www.power-living.com

#HappyBirthdayAlfie

My Bruce Lee approach to our Action4Alfie social media #DuchenneAwareness campaign now seems to bearing fruit. Although, I have to say it’s been a tough old slog so far and the amount of tweets/DM’s I’ve sent has probably put me into the stalker category! For those of you that may not be aware of the campaign, here’s a brief explanation… It’s Alfie’s 6th birthday next week, as we’re in self isolation we’re unable to host a party for him with our family and his friends. Your children’s birthdays are important whatever your situation but since Alfie’s diagnosis we try to make them extra special and create the most amazing family memories. In the past for either Mila-Rose or Alfie’s birthday we’ve either been away on holiday or we’ve had memorable parties for them. This year although the circumstances are unprecedented it wasn’t going to stop us. It’s all about turning a negative into a positive so we’re hosting a virtual Toy Story party with our family and friends. We’ve ordered lots of Toy Story party decorations which Alfie is very pleased about and all his friends will be dressing up! This was then followed by my lightbulb moment! Whilst sitting at the end of Alfie’s bed after bedtime stories with him and Mila-Rose, the idea of a social media campaign for Alfie’s 6th birthday, Duchenne awareness and Stay at Home message (originally it was Wash your Hands). It was destined to work!

Alfie’s Virtual Party invitation

For those of you on Twitter, you’ll know that the #HappyBirthdayAlfie #DuchenneAwareness #StayHomeSaveLives campaign is well underway. I’ve tried everyone, tweeting the likes of Tom Hanks, Tim Allen, Prince William, Piers Morgan, James Corden (as Alfie loves watching his pranks on YouTube!). Basically A listers to Z listers and back again. Most to no avail and the frustration started to grow. Then came the Bruce Lee moment and like the bamboo, I paused in order not to break. I reevaluated and decided to use the resources I had access to, why I didn’t do this in the first place I’ll never know. Actor, Matthew McNulty (Deadwater Fell, Versailles, The Musketeers) had helped us out on quite a few occasions with our fundraising events, he very kindly read a story to the children in the audience at our screening of Toy Story. I messaged him to ask if he could help out and the next day his video message was in my WhatsApp inbox closely followed by videos from Ben Batt (Our Girl) and his wife, Rebecca Atkinson (Shameless) and Andrew Gower (Outlander, Carnival Row,Miss Scarlet and the Duke). Matthew will also appear in an upcoming episode of Doctor Who and we’ve also received a message from the Doctor herself, Jodie Whittaker! How amazing is that???

6 is the magic number

Louise (my wife), previously worked with (Lady) Sarra Hoy, the wife of six time Olympic champion Sir Chris Hoy. Sarra has been very supportive of our work to raise Duchenne awareness and has kept in touch via Twitter. She is also an ambassador of the charity Bliss: For babies born premature or sick. I got in touch with Sarra in regards to what we were doing and she and Chris sent their message over this week. Six definitely is the magic number! Check out the videos and share the hell out of them on our @Action4Alfie pages. Links at the bottom of this blog.

I’ll continue this week in my pursuit of getting more messages. My aim is to simply just make people aware of Duchenne Muscular Dystrophy. I do believe we could be just one retweet away from it reaching that all important person who could work with one of the Duchenne charities to guarantee access to the right care, to improve research and maybe even one day find that all important cure.

This is not just for Alfie, it’s for the whole Duchenne community.

Remember Be like bamboo.

Stay Home. Stay Safe. Social Distance.

Kieron #DuchDad

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