in my dreams i'm a butterfly
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i met melanie last week. she's originally from CT, but now lives in bushwick, brooklyn. she was born with a genetic birth defect known as ectodermal dysplasia. it's a terrible syndrome whose many symptoms include no body hair (eyelashes, eyebrows, etc) and a lack of sweat glands. there are many other symptoms associated with ectodermal dysplasia and they make living a 'normal' life very difficult.
melanie has overcome her birth defect and is attempting to live as much a normal life as possible. she lives on her own and has enrolled in art school as a fine artist. although we may see people with disabilities every day, actually getting to know one is a life changer. i grew up with a double amputee father who was one the strongest people i've ever known. he never let his disability get him down (even though it took his life at 42 years old).
having met melanie, i was reminded of how attached we are to petty things in life. how we let completely insignificant events get us down. why do we get angry at traffic, at delayed trains, at long lines? even our insecurities that may have no basis in anything but our thought patterns are miniscule when compared to people like melanie who have real and sometimes even painful reasons to really be down. for me at least, she's beacon of light in a sometimes dark world - and i'll reconsider how i let external conditions affect me in the future. just sayin'â€¦
more images from our shoot to come.
Also by niko niko
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