To frame our story for those who don’t know us:

 

SMA. 3 letters that changed our lives. “Little Pia is such a calm baby”. Words I heard a lot this last few months and indeed, you were always sitting quietly in your bouncer, just looking around and not moving too much. I started to get a little worried when after 4 months you still couldn’t hold up your head. I followed my maternal instincts and went to the doctor. After weeks of uncertainty, doubt, and good hope, came the terrible verdict: SMA, an incurable muscle disease. The world collapsed around me. I started reading online, but all I found were ominous messages. After the first shock, after the first river of tears, we are now in fight mode : Me, your daddy, your big brother, the whole family, all of our friends and acquaintances will fight for you. We will do everything in our power to have you with us for as long as possible and give you the most beautiful life we can. You have already received four doses of Spinraza. A medication that won’t cure you but hopefully will increase your development immensely. I can only hope you have also inherited our fight-genes eand you will fight just as hard to stay with us. In the meantime we will surround you with all the love and affection we can give and we will overwhelm you with kisses, cuddles, presents and indulgences. Please remain your happy self. My little smiler, my princess, my dolly. You show the world just how much of a Wonder Woman you really are. My sweet Pia, I love you more than words can describe. So much love, your mommy

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