What does it mean to be ‘Rare’?
There are people in life that strive to be ‘different’, ‘noticed’….rare even. Yet, my son is rare and I wouldn’t wish it on anyone. He is not the ‘rare’ type of ‘cool’ or ‘individual’ of his own accord, his rareness was shoved on him and he had no choice in it.
You see, William developed Duchenne MD whilst in my womb, with no control of his or mine while it took over his body. One simple mistake of a gene and there you have it – Duchenne mutated. You see, I didn’t even know the risk was there – If I did I would’ve done something to control it – because no one would choose this for their child.
No one would choose this type of rarity.
His rareness means he cannot run, jump, hop, walk at normal speed, climb in the playground, swing on a swing……I won’t go on.
He is different to all of his ‘peers’ and these differences are showing more and more. He is not included as one of the ‘boys’ he cannot do football club or rugby club and he is only 6 years old! Each term more differences get thrown in his face and in mine. He is always smiling but I am not (on the inside), I find these differences and the fact that it’s becoming ‘normal’ that he is not included, hard.
William is Rare and we cannot change that. Tomorrow (28th Feb) is Rare Disease Day – there are a plethora of rare diseases, and Duchenne is certainly not the rarest. But William is the rarest we know and many of our friends & families know. He is the one I will protect, the one I will hug tighter every night and the one I will shed a tear for on each of these ‘days’ when the reminder is there for me and to spread awareness to you all once again.
The difference is that on 1st March your profile picture goes back to normal, your life goes back to normal. Mine doesn’t, my life will forever be full of rare and full of the unknown, the ‘what if’s’, the ‘will we find a cure’.
When life carries on for some, it stands still for others.