Things like this don’t happen to you… do they?

22 February 2018…

Mid-afternoon at work, I received the phone call from my wife Louise i’d been dreading. The consultant had just RANG to inform her that our beautiful little 3 year old boy Alfie had Duchenne Muscular Dystrophy. It’s a numbness that i’d never felt before in my life. Somehow I managed to hold it together at work, I got the bus home all be it in a state of shock. When I eventually got home, the grief just poured out. How can this be happening to our beautiful, happy little boy?

He’s a cheeky little chap whose smile lights up any room he enters! No he can’t run, climb, ride a bike or scooter like his friends but 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 by physio’s that he had a weakened core. He was delayed with his crawling, walking and talking – we were told he’s a boy, he’s lazy! He’ll catch up. 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!

 

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 child 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 protects 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.

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 (hence the blog!). 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!

 

I felt a bit helpless to Alfie and just wanted to do something positive. I needed a focus. 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 £10,000). 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 are currently in discussions with Lynnette Ellison from  Action Duchenne and our local health authority about doing a presentation of Duchenne from a parents perspective. If together we can change the diagnosis process for one family, we will have achieved success.
We then contacted Alex Johnson, whose son Jack has DMD. Alex set up the Joining Jack charity to help find a cure for DMD. She’s a patron for Duchenne UK and works tirelessly to help find a cure for not only her own son but other families in the same situation. She’s an amazing woman and very inspirational.
We were then told of a local charity called Embrace, 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.

As a Dad you have many hopes and aspirations for your children. You imagine proud moments such as, walking your daughter down the aisle or watching your son play his first football match. Moments that make you feel proud to be their Dad. I’m very proud of my 2 beautiful children and still have high hopes and aspirations for them both, we’re just taking an alternative route.

Until next time!
#DuchDad