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To Whom It May Concern

I wish you knew the turmoil my heart is in with every single waking beat.
I wish you felt the lump in my throat caused by the overwhelming fear of defeat.
I wish you saw what I see when I look into my child’s eyes
And how beautiful, innocent and pure they are that you never want to say goodbye.
You see you have put a price on my child’s quality of life.
You have put a price on my friend’s child as to whether they will even survive.
I know it’s all about cost but the reimbursements balance it out.
Carers, hospital stays, equipment, why can’t you see, this is what our lives are about.
I do not want to see my child waste away before me anymore.
I do not want my child to be weaker than the year before.
You do know it’s not just about the legs?
You know it is also about the arms, neck, breathing and feeding pegs.
I know you may think it is not worth it if the drug won’t make you jump up and dance
But even the slightest gain in movement I promise will only ever enhance.
A simple gain of strength in just one single finger alone
Means operating a powerchair, iPad and even a mobile phone.
Don’t take for granted you’ve just turned a door handle to enter a room.
Do not take for granted you switched on a light, brushed your teeth and held your head up all afternoon.
Those that have the power, please listen to me when I say
Do not look back with regret knowing you could have changed so many lives in so many ways.
Make decisions that will bring strength, happiness, peace and health
Do not make my child’s life stink of greed and tainted wealth.
Do the right thing and give Spinraza to all
Not just for my child and those that want it but so you can also stand tall
In knowing that you changed so many families’ lives
Granting access to the only treatment for SMA and stopping any early goodbyes.

— Lucy

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