An update from EmmaOctober 12, 2018 9:55 am
I thought it was time I wrote a blog about what’s been happening of late. Alex continues to do well, he’s still mobile which is a wonderful thing although I do find myself constantly watching over him and checking he’s okay when we’re out and about. From a still photo Alex looks normal, you’d never guess anything is wrong. I wish that was the case, I am constantly worrying about his falls, his knees can just go from beneath him – one minute he’s upright the next he’s on the floor.
As Alex gets older, there’s more of him to get back up on his feet – and he’s finding it more difficult to get back standing again without the help of someone or something to grab onto. With this, I find myself worrying about him out and about on his own. I often hear parents saying that now their child/children are at senior school they enjoy more free time as their child is able to walk, cycle or catch the bus home themselves – getting more independent is definitely a fabulous thing for all involved. But in the world of Duchenne, you have to think differently. It’s definitely a case that as they get older, they need your help more – completely at odds which how the normal realm of reality goes.
In the August school holidays, it’s a time to get active for all the family especially on holidays. But after this Summer holiday we’ve realised that we need to start taking Alex’s wheelchair (the one that’s been collecting dust ever since we had it after Alex’s hip break) – the more active he is the more he falls over and the more tired he becomes. We need to manage quiet stay in days with days out otherwise it all gets too much.
Duchenne crops up almost daily – Alex loves playing football at school, but as he’s in a mainstream school he’s playing against boys who haven’t got a disability so often gets frustrated as they don’t pass to him and he’s too slow to run for the ball. Alex has never been able to ride a bike and now Isla, his 5 year old sister is learning how to ride without stabilisers, I can see he’s disappointed he was never able to do this. When it comes to sports days and PE at school, he gets frustrated because he can’t always take part – like rugby – too difficult and too dangerous for him, so he sits out and watches. Going out for a family walk, I catch a glimpse of his grandparents holding him upright and helping him up the hills, shouldn’t it be the other way round. I feel for him, I really do. But he’s strong mentally and we are so proud of him in many ways.
I’m fighting my own inner battles – I like to keep positive and try and avoid any negative thoughts as this doesn’t help anyone, especially Alex and it makes me feel incredibly guilty. I want things to carry on being the same. I want Alex to be out doing his own thing with his friends more and more and not worry he’s going to take a tumble or break a bone. I know I can’t keep him wrapped up in cotton wool, and I more than anything want him to be as independent as possible. Writing this right now makes me feel sad, my little man is at school living life – and I am thinking about Duchenne and the impact its having on him and our lives. Having lived with this in our family now for so long, I can’t imagine what life must be like not having to think about the things we do. Carefree is no longer an option – very rarely do I feel carefree – there’s always but what if… and disappointments.
Only a few short weeks after our family holiday in August, we received the news that the clinical trial Alex has been on for the past three and half years, wasn’t working so was stopped with immediate effect! This news hit us hard. Having the feeling that you child is on a potential drug that might be working gives you a huge amount of hope. Then suddenly when this is taken away from you, you’ve got to gather your thoughts, regroup and decide the best way to tackle things. Alex was upset when I told him – but mainly because being on a clinical trial meant that he spend quality time away from home and from everyone else – we would go to the cinema and out for a nice meal every time we went to Newcastle – and he didn’t want that to stop – he’d also met a few friends too which was an added bonus. He was convinced that the drug was working – he’s said but mum can you remember that jar that I could open which I couldn’t do before the drug, and the big long walk I did with scouts – I think it’s because the drug was helping me.
There is a thing called the Placebo effect – when you really believe that something is going to help – it can do wonders. Has this helped – or is it because of the amazing support we received every single month from Newcastle that meant we were able to proactively manage Alex’s condition as best we could – through regular physiotherapy, checking his splints and exercises were right, etc. Whatever it was – we know that Alex has been doing very well for a boy with Duchenne who is nearly a teenager. We hope to get Alex on another clinical trial, he’s got to do a 3 month flush out before being tested to see if he is eligible for another trial towards the end of the year, so will keep you posted on that one.
Bringing this all back to Alex’s Wish, our charity continues to give us hope. Our supporters help us raise vital funds so we can get as many boys onto clinical trials as possible, as well as invest in early-stage research to help bring new treatments along that will keep boys active, give them a longer and more fulfilled life. I want to thank you all from the bottom of my heart – when things get tough our supporters make it all that bit better.
Much love Em (Alex’s mum) X
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