Duchenne Cloud

We’ve just returned home from the best holiday. In previous years, holidays have been a disaster for us and we’ve come home early nearly every time. It’s the main reason why we’ve never attempted a holiday abroad. Our perspectives are different since Duchenne walked into our lives and we were determined to stick this one out, no matter what. However, we didn’t need to ‘stick it out’ this time because everything was perfect and we all had an amazing week. Our caravan was lovely, and the site was brilliant. The boys have loved swimming every day, the weather has been beautiful, the entertainment has been so much fun and the team at the resort made it extra special for us following Hugo’s diagnosis (thanks to the arrangements of the caravan owner)! 

I went on this holiday with the intention of completely forgetting about Duchenne. Much easier said than done. I couldn’t forget about Duchenne and it was on my mind almost the whole time. It didn’t stop me having an amazing week with my boys, but I literally cannot escape it. It’s a horrible black cloud that follows us wherever we go. 

Hugo had the time of his life on holiday but spending so much time with all 3 boys highlighted just how much Hugo struggles. We had to use the stroller regularly, just to walk the short distance to the showbar, because he simply couldn’t manage it. I’m talking a stroll of less than 5 minutes, Hugo just couldn’t do it, yet his 2 year old brother could run that distance 10 times and not even be out of breath! On the rare occasion that we decided not to take the stroller, we ended up having to carry him. His brothers were giving it their all on the dance floor, but Hugo would last minutes before needing to be picked up so he could dance in my arms because his legs simply couldn’t support him for long enough. He can’t walk on sand at all so the beach was a massive struggle for him. Riley and Jasper were running straight down into the sea at full speed, whereas Hugo would be on his knees in seconds. However, that didn’t stop him and he was more than happy rolling around in the sea on his tummy! All these things break my heart, even though Hugo still has a beaming smile on his face. I really struggle watching him struggle to keep up with his brothers. 

I’ve gone through the whole ‘it’s not fair’ feeling again this week. Hugo is the sweetest little boy with a huge heart and a beautiful smile, why does he have to have this? How can life take away the most precious thing, the ability to play, away from a child? I know Hugo has found his own way of doing things, and he certainly doesn’t let Duchenne stop him from trying, but I can’t shake the thought that one day, he will be asking me why he can’t do what his brothers can do. 

To bring me back to reality with a bang, we got home to a letter from the DLA refusing the mandatory reconsideration, informing us that we now have to go down the tribunal route. Their reasons for the second refusal are due to the fact that he is unwilling to walk not unable, and his condition doesn’t prevent him from doing so, therefore he is still ‘choosing’ not to walk. How they can say that a child of 4 years old, who is desperate to run on the beach and dance with his brothers but simply does not have the strength to do so, is ‘choosing’ not to walk? As for his condition not causing it is just absolutely shocking. He has a muscle wasting disease which is taking away his mobility day by day. It angers me just thinking about it. 

Now our holiday is over, the Duchenne fight is back on! But first, here is Hugo with his gorgeous smile having the time of his life on the beach xxx 

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One thought on “Duchenne Cloud”

  1. I read this with smiles followed by tears…..then anger!!!
    You have to fight for what’s right, and if tribunal is the only route then tribunal it is!!
    This ‘so called decision’ is based on ignorance …ignorance of what Duchenne MD really is.
    Beautiful picture, beautiful boy!…,…and good to hear you all enjoyed your holiday. xxx

    Like

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