Emma’s blog

March 12, 2018 2:14 pm

It’s been a long time since I wrote a blog, I thought it time to put things into words on what’s been going on. These blogs are in essence a snapshot in time.

It’s been a busy time of late. We’ve moved home, only a few miles from where we were. We were very happy in our old home, surrounding by lots of great friends. But we needed to move, its been on the cards for a long time. When you have a child with Duchenne, we are told time and time again that you must prepare ahead of the game. We knew that we need a fully adaptive home. One that would cater for Alex’s future needs. Alex also hates stairs, he would be happy if he never had to go up another stair in his life. It’s tricky for him – when your muscles don’t work well, getting up stairs take a lot of effort. Sometimes his knees go underneath him and he falls over very quickly. I know now when this happens to leave him and let him get up on his own – he doesn’t want any fuss.  So the house is coming on, we’re living in a building site, but its going in the right direction.  Alex will finally have a bedroom and wet room downstairs.  We’ll have a home which is fully wheelchair friendly and we can finally put our minds at rest that should anything happen we are prepared.

Don’t get my wrong, Alex is still able to walk.  This photo is of him at the top of Bradgate Park after a walk. He’s doing incredibly well – for a boy of 11 with Duchenne – still being able to walk is a very big deal.  We were always told Alex is likely to be in a wheelchair by the time he reached 10 years old. We are incredibly grateful for this – we know so many boys of this age who can’t walk by this age – we are very lucky.  Doesn’t always feel that way though – Duchenne is always lurking in the back ground showing us its ugly head.

What was amazing is meeting a young chap last week in Newcastle who is still walking at 16 years old!! It was fantastic for Alex to meet him, I’m pretty sure it gave him a huge boost – to know that it is possible.

It’s been a hard time for Alex recently. He moved from his lovely little village primary school surrounding by friends and teachers he’s know for ages. Primary school is great, they spend most of their time in one class so not much walking around.  He’s now in a big secondary school full of older children and new teachers.  Most of which have no idea that Alex has anything wrong with him. Which on the one hand is great, but also means he gets called names on occasion and people don’t always understand.  Last year, he was approached by some older kids in the play ground, they said ‘Your the one with the charity aren’t you.” Alex said ‘Yes, Alex’s Wish.” “That’s right – they said – won’t you die by the time you’re 15!!”. Great! Just what he needed. So my job, has been hard of late, don’t get me wrong I’m not complaining. That’s my job. Parenting is never easy, not for anyone. But when you have a child with a serious medical condition that won’t get better – it makes things a lot more challenging.

I’m really trying hard to let Alex deal with things himself if he can.  I want to give him the skills to be able to tell people how it really is. For him to feel equipped to deal with things in his way and on his terms. On the whole, Alex is feeling positive about his future – he has plans to go to University, to start a family, to learn how to drive. And my gut feeling is that he will!  I love my little man for his amazing attitude to life – he could definitely teach some adults a thing or two. He’s not a feeling sorry for himself kind of person.  He is always thinking about other people and I love him for it.  Don’t get me wrong, Alex has bad days like we all do. Sometimes he’s very quite and I know when to put my arms around him and give him a big hug. He doesn’t have to tell me much for me to know what he’s thinking. He wishes he didn’t have Duchenne, he wishes he could just play out, ride a bike, run around without a care in the world. I can’t imagine what must be going through his mind sometimes, it’s a huge thing having a life-limiting condition at such a young age.

But, he knows that he has so many people around him who cares – so many people raising money to help bring new treatments to help him and everyone else with Duchenne. Alex’s Wish still is one of the best things we ever did as a family and we thank all of our wonderful supporters for the hope they give us. Thank you, you definitely make our lives easier to live with – and we are as determined as ever to carry on our fight to end Duchenne for all!

I promise I won’t leave it so long to write my next blog.

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