“Time is a precious thing, never waste it”

It’s Duchenne Muscular Dystrophy World Awareness day on the 7th September.

This may not mean anything to alot of people…most people won’t know what Duchenne Muscular Dystrophy even is, I didn’t either ten years ago but my cousin’s son Aston Freddie has this condition so as a family we know more about it than those around us. I often feel a little helpless in this area, there isn’t that much practically that I can do to help…it’s one of those conditions that there isn’t an answer for, there isn’t a large amount of research into helping those with it so my little way of helping is trying to raise some awareness through this.

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That beautiful smile. 

I have people ask me sometimes about photos they’ve seen of him that I’ve put on my Facebook, it’s something you have to explain every time because no one is really sure what it is. It’s extremely sad that there is so little knowledge about it. I’m not going to attempt to explain all the details but DMD is a muscle wasting condition that affects all the muscles in the body and takes away the ability for walking, standing, sitting up unaided and will affect the heart and many other muscles. It is a fatal condition of which there is no medication to make it better.

When I think about my little cousin it’s become a normal part of family life, not only for his parents and little sister but also for the wider family. We know the limitations and the things we need to do when we are spending time with him, know that things are different for him; we all try to support as much as possible.

For me, I try to make any time spent with him as good as possible, it probably isn’t much in the grand scheme of things but I think time is so important, we won’t have it forever and wasting it is just not an option. I went away with Aston, his sister Ava Rose and his mum (my cousin) Sarah last week on a mini European road trip. It was amazing; we all had so much fun. It did really open my eyes a little though, I adore the kids and couldn’t imagine spending that road trip with anyone else…I know alot about Aston’s condition but I learn new things all the time and seeing how they managed every day was inspiring.

We bonded a little over the fact he can’t straighten his arms fully and I have an arm that will never straighten too…the difference is mine doesn’t matter that much really, it’s no longer an issue because I work with it, Aston is wheelchair bound and will only get worse, it makes me want to do anything to make it better. Me and his mum talked a bit about his friend who was having surgery and those are the things I can chat to and support him with because I know what going in for surgery is like, the worry you have, even at that young age…that’s the kind of thing I feel like I can help him with if he wants to talk about it. We all also had a laugh over my dodgy hip that caused a few interesting situations at the beginning of the week…including me having to use Aston’s manual wheelchair because I couldn’t stand which Sarah kindly nearly tipped me out of! The children found it very funny that Fay “looked like she was drunk when walking.”

Aston’s also a big superhero fan and so am I, whilst his mum had no idea what we were talking about we sat discussing which superhero was best and the pros and cons of Batman V Superman. We also share a love of Harry Potter and have had many conversations about that…something I am definitely good at! His little sister Ava also told me the first Harry Potter film was one of her favourites which of course made me very happy. I’m kind of like a child at heart so I definitely bond with both of them over that kind of thing. Those kinds of moments are the most important for me, I’ve lost quite a few friends to cancer and when I know it’s going to happen I try to make the most of it…but it’s usually in the back of my mind. With Aston he is so amazing and has adjusted so well to what he’s going through that I often forget altogether that he is poorly and deteriorating, it’s not something we think about all the time because we see him alot, we spend time with him and I have those conversations that I would have with my other younger cousins, it’s a normal part of our lives…it’s only later that I sometimes think “Wow…I’m so glad and lucky I have that connection with him.” Because one day he won’t be here and that breaks my heart, I couldn’t imagine not having Aston around and I’m sure the rest of our family couldn’t either. He’s so young and in alot of ways just like any other ten year old, he likes Marvel, playing video games and watching football (something I really did try to be enthusiastic about when he was telling me about it.)

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Outside the safari.

What I loved most about our time away was that we did all of those things you’d do with children, swimming, safari, wandering round a castle. I was probably a little overprotective when we first went swimming because I don’t want anything bad to happen but he knows his limitations and was absolutely fine…even told me off a bit for checking on him one too many times which made me laugh. His condition has never limited what his parents do with him…my cousin Sarah is so determined to make sure both children get to experience new things and grow up with knowledge of different cultures. She’s an inspiration and one day, when I’m a mother I hope to be half the mother she is.

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Selfie with Sarah!

As a family we are pretty resilient but I don’t think anyone of us could say that it’s not an emotional thing to think about, I don’t like to think about the future too much, especially where Aston is concerned, I love him and he’s amazing, he reminds me of me in alot of ways and although I could never imagine what he goes through, what he thinks about when he knows someone else with his condition has passed on I do know what it’s like to have an uncertain future when you’re young, to have a condition that does limit what you can do. The difference is, I can manage my bone condition and I got better…we know he won’t but it makes me all that more grateful that I am able to spend time with him, to laugh and debate with him. I look at him, his sister Ava and his mum and am so in awe and inspired by how incredibly they cope every day. It’s a way of life for them and it shouldn’t have to be…sadly it’s the case for families with a DMD diagnosis and it won’t get easier, they make the best of every moment and it’s important, something we should all do.

Aston is the most amazing young man and I can’t wait to see him start secondary school and to have lots more film conversations with him. He deserves the best, his sister and parents do too and us, as their wider family will always do everything we can to support them and make every second extra special.

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Road trip gang  having dinner in the Netherlands  🙂

Please take a moment to have a look at the following links that tell you more about the condition and share if you would like to help widen the awareness of this condition:

http://www.actionduchenne.org/what-is-duchenne-muscular-dsytrophy/

http://www.worldduchenneday.org
Fay xxx

 

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