Opening doors for children living with rare diseases
Amara is the most eloquent inspirational & bravest little girl ever, she has a zest for life & lives life to the fullest. Behind her captivating smile & colourful magnetic personality you could never imagine the life threatening health battles she faces daily due to her rare complex & life threatening diseases, or the amount of times she has been critically ill deteriorating in intensive care on life support & yet, has defeated death whilst all the odds were against her. She spends her life going in & out of hospital, having to stay there for months on end enduring endless invasive traumatising procedures & being pinned down and restrained by 4,5 or more adults to either gas her to sleep, cannulate her or take bloods- as she fights for her life kicking, lashing out trying to break free and crying so much so that even after the general anaesthetic takes effect you can still hear her whimpering through the gas mask as her body quivers whilst she still sobs. Sadly, this has deeply affected her causing her to suffer emotionally, mentally & neurologically on a daily basis.
Ever since she was a tiny baby her tiny vulnerable body has been fighting to survive, her heart & lungs filled with fluid struggling to operate, her gut unable to absorb nutrients causing her to be malnourished & her body to shutdown, cancer of her lymphatic system preventing it from draining fluid from her tissues before returning it to the blood stream and to protect it from infection & disease, leaving it all accumulating uncontrollably around her vital organs & in her limbs making them disproportionately large heavy & painful for her, limiting her mobility. Chocking & vomiting up blood & casts, respiratory difficulties causing her to struggle to breathe properly, her skin stretched, broken & leaking causing her unbearable irritation & pain...
All this & a lot more is just everyday life for us yet ~Behind Our Smiles~ you would never know it...