What a 6th year my boy has had. We’ve crammed in lots, because the unknown is always there and we want to enjoy more laughter and smiles each and every day.

A lot of changes have happened this year, firstly the positives for my wonderful boy: he’s taken up and loves horse riding; he began 1-1 swimming/hydro and can now swim without support & with confidence; he’s starting to read; he’s understanding his numbers; he’s striving to learn; he can now do Lego on his own; we’ve enjoyed lots of wonderful trips and holidays making memories.

Medically duchenne has also meant changes: more daily stretches; a move to daily steroids; introduction of daily heart medication; more alternative medicines; daily stretch board; intensive physio courses. Of course many more appointments than any other child has to attend, but my resilient strong boy copes every time.

I won’t talk about the negatives, we all know what they are, and I just wish for one thing in life – a cure to save my amazing little boy.

I can focus on a very exciting, tiring, draining but ultimately life changing 9 months of 2019 – our big build. What a crazy time that was, but we got through it and we now have the most wonderfully adaptive inclusive home to make many more memories.

William continues to teach me, every day. No matter what life throws at you, no matter how hard I find some days (& I still do), no matter who you encounter – if you do it with a smile on your face, somehow it will be ok.

I cry most weeks at what he cannot do, the differences between his peers and his sister, the struggles this society puts on disabled people. Making some of the most simple things impossible. Making our life as a family so bloody unnecessarily hard.

Would I change William – no.

Would I change Duchenne & what it does to him – yes.

I am so proud of my little boy – everyday. What he deals with in life and what he continues to smile about astounds me – I am yet to meet an adult who could ‘cope’ with what life throws at him.

I love you William and I will try my hardest in my life to give you as long a life as I can, to love you as hard as I can and to try to find you a cure.

You are my hero each and every day.

Love mummy x

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