I'm Kieron and I live in Leigh, Lancashire, with my wife, Louise, and our two children, Mila-Rose, who is seven, and Alfie, who is six.
In February 2018 our world was torn apart when Alfie, then aged three, was diagnosed with Duchenne muscular dystrophy.
We were told this devastating news over the phone by our local paediatrician and left with no direction or support. The next appointment we would have was at Royal Manchester Children's Hospital three weeks later.
I have since made it my personal mission to raise awareness and to improve the post diagnosis support for families. I set up a crowdfunding page, Action4Alfie, to raise funds for Alfie's future requirements. I've also successfully reached out to the Mayor of Manchester, Andy Burnham, to help improve the general Standards of Care for Duchenne families in the Greater Manchester region. And I write a blog (Duch Dad) from my perspective as a dad dealing with my son's diagnosis of a life-limiting illness. It has become my coping mechanism in so many ways.
The start of shielding
On Monday 23 March, we began the 12-week shielding process. Alfie is on the extremely vulnerable list as he takes the steroid Prednisolone daily. The first few weeks almost felt like a holiday as I'd been given this unconditional time with my beautiful family.
My wife and I were placed on furlough, and I was really enjoying - beyond all the fear and uncertainty - just sitting down together as a family at mealtime. A basic everyday family thing, you may think, but put into the mix work, day-to-day stresses (we have more than the average family), bedtime routines, etc, and it’s actually very rare that we do this simple basic family thing very often. Instead you find you get home from work at, say, 6pm, spend a bit of time reading with them both, then palm them off to bed so you can get something to eat before it’s time for you to go to bed yourself!
We live in a very materialistic world where we have to have everything, whether it be the latest smartphone or something just to keep up with the Joneses. I actually thought at the time this period in all our lives would change people’s outlook on how they not only live their life, but also appreciate what they have. It almost felt like someone had pressed the ‘Stop the world, I wanna get off’ button!
Trying to home school
As the weeks went on the honeymoon was over and home schooling was creating far too much tension and stress. After all, we're not teachers and the kids didn't see home as being school. You get this overriding feeling and tension that you should be doing more school work with them, but we didn't want to create more anxiety. We are in the midst of a global pandemic!
Put this into the context of taking Alfie out of his usual school routine and trying to home school not just him, but Mila-Rose. To be honest Mila-Rose will actually sit down and do some of her school work and she’s an excellent reader and very creative with her writing. Louise and I were even more astonished as to why his Education, Health and Care plan isn’t in place yet and the fact he requires access to a one-to-one and repetitive learning.
His attention span for each subject is roughly 10-15 minutes at the most then his focus waivers. This will lead to frustration and that then leads to behaviour where we encounter a massive meltdown and sometimes an aggressive nature, which is very distressing. We decided we’d teach Alfie through play and use activities that would enhance his fine motor skills. He loves painting/drawing, cutting and sticking, jigsaws/puzzles, dancing/singing.
Don’t get me wrong, it’s not all negative, Alfie is a very loving and sociable boy the majority of the time. His rote memory is exceptional: he’ll remember a place or memory from two years ago like it was yesterday! He can remember large chunks of information, like conversations from movies or words to a song. He’s a very comical little character and he doesn’t half make us laugh with some of the things he comes out with. He also has a little bit of an operatic voice when he sings, so who knows where that will get him in the future!
Celebrating a birthday in lockdown
The highlight of our shielding period has to be Alfie's sixth birthday at the end of April. He was looking forward to having a Toy Story 4-themed party with our family and his friends, but lockdown put paid to that! Birthdays are special for any child but when you have a child with a life-limiting illness you really want to make every single one count. At the end of March I had my 'Eureka' moment. To raise awareness of Alfie's condition I would start a social media campaign to try to get well know celebrities to wish Alfie a happy sixth birthday and to also stress the importance of staying at home to protect vulnerable people. I began tweeting the likes of Tom Hanks, Tim Allen, Prince William, Piers Morgan, James Corden (as Alfie loves watching his pranks on YouTube!), Ant and Dec. Most to no avail and the frustration started to grow.
I then used what I now call my 'Bruce Lee' moment. I'd read a quote from the man himself on my CALM app whilst doing a meditation: “Notice that the stiffest tree is most easily cracked, while the bamboo or willow survives by bending with the wind.”
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. 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 also appeared in an episode of Doctor Who, and we received a message from the Doctor herself, Jodie Whittaker! A few days later he surprised us with a message all the way from LA from none other than James Corden and one also from David Tennant. During this time my sister had also contacted our local regional news programme, Granada Reports, and we appeared on the programme twice in one week including a live appearance from our home (filmed at a social distance from outside) the day before his birthday where he also got messages from Ant and Dec, Stephen Mulhern, Catherine Tate, Ben Shephard and Charlotte Hawkins. We also hosted a Toy Story-themed Zoom party with all his friends on his actual birthday. As you will imagine, it's a birthday that will live with us all forever and probably one that will never be topped.
Living in each others' pockets
As the weeks went on we were all becoming increasingly frustrated with staring at the same four walls, day in day out. The strain was showing on us all and this period has put a strain our marriage. We're not made to be living in each others' pockets 24 hours a day, it's not healthy and even the strongest of relationships would be tested. Thankfully we had a spell of really good weather which allowed us some time in the garden but when the rain came so did the strain!
I think it was week ten when my wife spoke to Alfie's consultant at Royal Manchester Children's Hospital, and she suggested that for our own mental wellbeing we should start going for walks locally. She knew we were responsible and sensible enough to socially distance when and where required.
I have to say, we felt very anxious going out for the first time, it felt like another world altogether. Almost like being in a Netflix movie, very apocalyptic! How could something as simple as going out for a walk feel so strenuous? We have encountered on numerous occasions a lack of ignorance from the general public in regards to social distancing. You would think that common sense would prevail when you see family with 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. I kind of now put going for a walk in the same bracket as when you're driving a car, you have to be even more aware and take a cautious approach of who is coming towards you, walking behind you or around the corner from you.
We received the letter from the Department of Health and Social Care advising us we would be required to shield until 31 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 it's OK for the general public to go and get their hair done, do a bit of shopping and then go for swift half down the pub afterwards, while 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?
This all raises questions about disability rights. During this pandemic, extremely vulnerable people have been left at the bottom of the pile, in my opinion. Any information we have found out has been secondary. Where is the voice for the vulnerable people?
Everyone in the vulnerable category has stuck by the rules by staying within the confinement of their home. Staring at the same four walls every single day. Their mental health suffering daily. It’s a humdrum existence. I don't think people realise how hard that really is, it's a massive sacrifice and it's even more difficult to see people flocking to the beach in their thousands during a global pandemic. It's just pure selfishness, and they have the attitude "It's OK, it won't affect me."
Approaching 1 August
I’m not really sure what our way out of this situation is at the moment and what we’re expected to do once 1 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 1 August we will have to make anxious decisions that are usually just an average everyday task.
Should the government introduce a 'shielding hour' that works in a similar way to how key workers were allowed to shop alone to avoid the crowds? I'm sure it would ease the anxiousness of being thrown back into society. I also think people who have continuously shielded should be easily identified when out in public. Maybe a shield-shaped badge, or a carer wears a T-shirt or hi-vis vest? At least this way the general public are aware and could socially distance when required.
I think we will just have to take the baby-step approach. If we are to go to the shops then either myself or my wife will go alone early in the morning or late in the evening. We can't take the risk of letting Mila-Rose and Alfie back into society too soon. We're also gradually introducing our close family and friends back into our 'bubble' by having socially distanced chats in our garden.
Finally, if you’re reading this while sat in the hairdressers/barbers chair or while downing that long-awaited cold first pint in the pub, please spare a thought for the families in our position who are in need of some real respite due to 19 weeks of mental and physical exhaustion. I guess we’ll just have to plan our own Great Escape like Steve McQueen did, but it will be a while until we all cross the wire to get our baseball back!