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 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