by Kieron Sales
It’s June 2018, I’m in Manchester with my wife, Louise. She’s doing a bit of clothes shopping and trying some outfits on. I meanwhile, am being the typical bloke and sitting outside the changing room browsing on my phone to check the latest football scores!
On my Twitter feed I come across an interesting retweet from one of my followers. It’s a digital magazine by the name of Rare Revolution, they’re looking for Dad’s who have been affected by a Rare Disease and they’re looking for contributions.
I saved the tweet and a few days later I wrote about my experience.
Alfie is our beautiful, happy little 4 year old boy. A cheeky little chap whose smile lights up the room!
Alfie can’t run, climb, ride a bike or scooter like his friends. He doesn’t let this bother him and his smile never fades. He just gets on and if he falls down, he quite simply gets back up again.
He’d always struggled to keep up with his peers. He couldn’t sit up properly as a baby – we were told he had a weakened core. He was delayed with his crawling, walking and talking – we were told he’s a boy, he’s lazy!
It took us almost two and a half years to actually get the bottom of why he was delayed. We pushed and pushed to get him referred to a Paediatrician, this took a year as the first referral got lost in the system.
Diagnosis
Then, in February 2018, our family was torn apart with the news that Alfie, then aged 3, had been diagnosed with Duchenne Muscular Dystrophy.
A severe type of muscular dystrophy, the symptoms of muscle weakness usually begin around the age of 4 in boys and worsens quickly.
Most are unable to walk by the age of 12. DMD affects around 1 in 5,000 males, is a life limiting condition and at present has no cure.
It’s hard enough when your child has a cold or they’re sick. You just want to take it away from them. To be told that your son has an incurable disease is the most devastating news any parent can receive.
Alfie’s diagnosis hit me very hard, to make matters worse the consultant had told my wife over the phone and we were offered no ongoing support from our local hospital.
I broke down uncontrollably at home, at work, in the car, I’d never experienced pain like it. I just felt so alone but still had this overriding feeling that I had to be the strong one for our family.
After all, I’m the Dad, the man of the house, the main breadwinner and most of all, the one who would protect us.
Except I had no answer as to why this had happened to our family and most of all to my little best mate.
I would try to go to sleep, the word ‘Duchenne’ was pounding round my head constantly. The moment I woke up there it was again. It just felt like a vicious cycle that I couldn’t get out of.
Nothing seemed to matter anymore, everything seemed irrelevant.
We’d just moved to what was to be our forever family home the same month as Alfie’s diagnosis. It felt less like home and just more like somewhere to sleep.
I had no motivation to do anything. All the plans we had seemed to go out of the window in the first few months. A cold shiver running from head to toe, day through to night.
I’d find myself just staring into space at work asking myself questions such as… What was going to happen to my little boy? How will this affect our daughter?
I can only describe it as shock that turned into a grieving process.
Self help
After the horrible way the diagnosis was handled, I found strength to go out and find support.
First and foremost, I had to be selfish and try get out of this spiral. After all if i’m not well then how would we cope financially? My wife works 2 days a week so a bigger mortgage means bigger bills!
I’m not really what you’d call a ‘talker’, my wife constantly tells me that I bottle things up and need to open up a bit more.
I’d seen on Facebook a local Men’s group called Andy’s Man Club. A weekly group where men can go for a cuppa and a chat about things in their lives that they’re struggling with.
The group started at 7pm, i’d told myself all day that i was going no matter what. I’d had a tough day at work and the clock ticked closer to 7pm. I decided to go allbeit i was running late.
I parked up outside at just gone 7pm. There was no way I could go in now, the group had started and being the newbie walking in with all eyes fixed on me.
I remember sitting in the car and the thought of me not being well for the family wouldn’t do us any favours in the long run so I forced myself out of the car and went into the group.
I was welcomed by eight guys, both young and old who immediately made me feel at ease and offered me a cuppa. We all listened to each other and offered advice on what might help.
It felt like a weight had been lifted off my shoulders being able to talk about how I felt. It’s the most difficult thing to do but i’d highly recommend talking about your problems even if it is to eight strangers!
Action4Alfie
I felt a bit helpless to Alfie and just wanted to do something positive. After much deliberation we set up a crowdfunding page called Action4Alfie.
The money raised will fund any future requirements for Alfie (so far we have raised over £12,000). We also want to use the page to raise awareness of this devastating disease and to stop any family going through the diagnosis the same way as we did.
We aim to change this by finding a way to give parents direction and support at the diagnosis stage. Something that seems to be missing.
We were then told of a local charity called Embrace Wigan and Leigh, which is a user-led charity dedicated to helping people with all types of disabilities and their families who live, work or use services primarily within the borough of Wigan and Leigh, gain the support they need to live a fulfilling life.
Lynn, from the charity told us to look up a poem called ‘Welcome to Holland’. It moved us to tears. It describes the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.
Aspirations
Writing this article inspired me to create my own blog which I still write to this day.
I find it a great way to let off a bit of steam and after waiting 8 months for a counselling appoint appointment it has become my coping mechanism.
Duchenne brings a lot of day to day challenges to not just the boys but the families themselves.
I wouldn’t class myself as a writer but it’s surprising what you can express in such a short space of time. Check out my #DuchDad blog
Best Regards,
Kieron
Take part in important survey
