
Video = http://srilankanstube.com/index.php?option=com_seyret&Itemid=53&task=videodirectlink&id=13568
Sadeepa Munasinghe doesn’t laugh; she joyfully erupts. Her mouth stretches
wide, her almond-shaped eyes dance, and her head sways gently back and forth as
a high-pitched, effusive shriek escapes.
Half the time, the joke is on
you—you just don’t know it yet. You were too busy straining to hear what she was
saying, trying to decipher the garbled words and anticipating something stark or
serious would come out of her mouth. Isn’t that what we expect from people
battling debilitating disease? Not jokes or playfulness or pure delight. Not an
earnest gaze followed by “Is that the only sweater that you own?” when she
notices you wore the same threads the last time you met.
Then you see the
glint in her eye, her contagious laughter washes over you, and you think If she
can be this happy, how can I ever complain about anything?
Sadeepa, 22, has Wilson’s disease, a rare and complex genetic disorder that
causes the accumulation of copper in the eyes, brain, kidneys and liver. If not
treated, it is fatal. Copper enters our bodies through food, and some
foods—organ meats, shellfish, dried beans, peas, whole wheat, chocolate—have
especially high levels. A little bit of copper is essential for good health; we
ingest it and our bodies successfully dispatch the excess. Sadeepa’s body wasn’t
able to rid itself of the copper, causing a toxicity that nearly claimed her
life. There were long hospital stays and feeding tubes and neurological
problems— trouble swallowing, speaking, walking—that continue
today.
And, as awful as the disease is, it’s only part of the story. Sadeepa is from Sri Lanka, meaning that, as an international student, she must be enrolled in school full time or else leave the country. No medical facilities in Sri Lanka can handle a Wilson’s patient, so leaving is out of the question. Her parents can’t get back to the United States, so it’s just Sadeepa and her older brother Chalan, 26, living in a small Ypsilanti apartment, always figuring out how to survive.
more info
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