15/05/2026
"Imagine this . . .
You are lying in your bed, unable to move. Your arms and legs feel like lead. You are hungry and you need to go to the toilet. But you can’t move. You can’t even move your arm to reach a button to notify anyone that you need help. You keep on willing your arms to move, but they don’t react. Your mouth is dry and you need a drink of water – where is someone to help you? And then you are hit with the agony of an itchy nose. Aaaarrrggghhh!! It is driving you insane because you can’t move to scratch it. Oh my god, will someone please come and help me! You call out, hoping someone will hear you. And then, from around the corner, your mother appears. She looks tired from getting up 13 times last night to help you turn in bed, and yet her face still lights up with the most incredible look of love when she sees you. She tends to your needs, she kisses your face, she puts your arms around her neck so you can feel what it’s like to hug someone, and then she pulls up a chair so she can sit with you and spend quality time watching your favorite television show or playing video games together.
And this is a good day.
Many people incorrectly assume that a child with Duchenne will lose the ability to walk, and nothing else. But nothing could be further from the truth. The reality is, Duchenne affects pretty much every single part of their body. Think about it – there are muscles in our legs, our arms, our torso, our neck, and of course our heart and diaphragm are muscles. Duchenne ends up affecting every single muscle, even the eyelids. And it’s when the heart and diaphragm are affected that death will eventually occur.
There really is no way to sugarcoat the reality of Duchenne. It sucks. It’s not as simple as just never being able to walk again – if only that was the case. It affects everything, from the way our kids live their lives, to the extra care needed by us (their parents). It affects families financially, emotionally, mentally, and spiritually. Marriages crumble much harder and faster than average, because of the overwhelming effect it has on the entire family.
It’s often difficult for family and friends to understand the difficulties in our lives compared to theirs. I was told by my sister that “you’ve changed” over the past few years. Well, I think it’s safe to say that anyone who doesn’t change when hit by something like DMD is both inhuman and devoid of all emotion. I have changed, I’m not the person I used to be. I miss the person I used to be, but I know I will never see that person again. Whereas I used to be happy and carefree, now I’m just scared and sad. And I’m on a mission to give my son (and my other children) the best life possible, even if that means upsetting others in the process. I’ve learnt that life is not a popularity contest, but I’ve also learnt that life is short and uncertain, and time is too precious to waste. Even though it’s reported that kids with Duchenne are living into their twenties and thirties, that seems to be the minority. The fact is, many kids with Duchenne are dying while they’re kids.
Living with Duchenne means a lifetime of doctors, medications, appointments, school struggles, expenses, and heartbreak. It puts mothers and fathers under stress that no marriage should have to try and survive. It means siblings get left out, pushed aside and ultimately left behind by their brothers illness. Duchenne alienates family members and rips apart friendships. Duchenne hurts, both physically and emotionally . It is a backache from too much lifting, and a headache from too much crying. Living with Duchenne means heartache, helplessness, fear, and grief. It is a lesson on patience, acceptance, and loving even when it’s hard. And it gets hard."
Don't count the days, make the days count
🎈🎈♥️♥️
