“There are only 7 kids in the world who have what I have. I like to think I’m one in a million… or billion. I was born with a very rare gene defect. Basically my body does not detect how much manganese it’s absorbing and so the manganese overtakes the iron which makes my blood super, super thick and that causes blood clots in my brain which causes me to fall down randomly. The treatment I get removes the manganese from my blood stream. Unfortunately, it also removes a lot of other good things, too, so I usually need about a week to let my body balance things out again.
People always say, “You must be sad that you’re missing out on things.” It makes no sense to worry about all the things I’ve ‘missed out on’ because then I might miss out on all the things I actually GET to do. As far as I’m concerned I’m just a normal 17-year-old.” - Grace
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