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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.
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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.
A long,
strange trip
Sadeepa’s
words come slowly and faintly, just as the disease did. Leg
cramps bothered her while she was in Sri Lanka, but doctors
chalked it up to potassium deficiency. Seemingly healthy and
unaware of the toxic stew brewing in her body, she came to
the United States to study biomedical sciences at the
University of South Alabama in 2004. Chalan had arrived two
years earlier and was studying electrical engineering at the
Mobile, Ala., school. Within a year, they were met with a
grim reality.
First came
a persistent cough. Then back pain. Then a permanent grin
adorned her face—a Joker smile, if you will—even in moments
of contemplation. Wilson’s disease was beginning to rob her
body of its youthful grace, but the siblings had no idea
they were dealing with a monster. The symptoms continued to
pile up for two months while doctors in Alabama struggled to
make a diagnosis. “They started treating her with a drug
called penacillamine, which made her worse, actually,”
Chalan recalled. “She totally lost it after that. Her hands,
legs—everything—got stone hard. She lost her balance. She
couldn’t eat anything or swallow. She was dehydrated; she
was throwing up.” More than 10 trips to the emergency room
ensued as Chalan raced to save his sister.
“I kept
asking the doctors, ‘Do you know what you’re doing?’—because
she was going bad,” he said. Penacillamine is recognized as
a standard course of action in Wilson’s disease— it’s used
to bind and remove metals from the body—but its effects were
devastating to Sadeepa. Her pain was so intense, her body so
rigid, that Chalan finally allowed one clear and terrifying
thought. His sister would die if he didn’t take matters into
his own hands. |
The tight-knit Munasinghe family— Chalan,
Indrapala, Sadeepa and Pauline—often traveled across Sri
Lanka due to Indrapala’s job as director of catering and
housekeeping services for Parliament. Sadeepa's memories of
home are filled with images of mango, banana and curry
trees, while Chalan thinks of the fresh warm air that swayed
the branches from side to side.  |
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He was
slowed by Hurricane Katrina and a brief evacuation of
Mobile, Ala., but soon he was researching online. The
Wilson’s Disease Association International recommended he
take Sadeepa to the University of Michigan for treatment.
Doctors at U-M would take her case only if she had been on
penacillamine fewer than 28 days, believing any more could
have rendered her brain dead. Fortunately, Sadeepa was
eligible for treatment. Chalan loaded their belongings into
his silver Toyota Camry and made the 970-mile trek north in
September 2005. Once in Ann Arbor, Sadeepa spent 45 days at
U-M Hospital, a battalion of doctors swarming over her.
Chalan
transferred to the engineering program at EMU, and their
parents, Indrapala Munasinghe and Pauline Perera, landed in
the United States on tourist visas. The family was together.
Terrified and shocked and unsure what each day would
bring—but together. Indrapala and Pauline couldn’t work
while they were in the States—the tourist visas prevented
that—but the family worshipped at St. Andrews Episcopal
Church in Ann Arbor, and enjoyed meals together (Indrapala
was a chef for the Sri Lankan Parliament). And Pauline was
able to help bathe Sadeepa and braid her thick, black hair. |
Team effort
Fast forward three years. Sadeepa’s speech has gradually
improved, and she’s now a student at EMU, studying
simulation, animation and gaming. Chalan attends classes
with her, serving both as chauffeur and as personal note
taker. Sadeepa can walk, though with a shuffling gait.
Saliva still escapes the right corner of her mouth. Her
hands are the most visible sign of the disease, with stiff
fingers that won’t relax into a natural inward curl. She is
still being treated at U-M, goes to speech and physical
therapy, and takes zinc acetate, a medication that helps
prevent copper from being absorbed in the stomach. She needs
help with daily activities like getting dressed. Indrapala
and Pauline left the U.S. in July 2008 to tend to matters in
Sri Lanka—their house in Battaramulla was burglarized while
they were away, their life savings depleted—and now they
can’t get back into the country. Once again, it’s just
Chalan and Sadeepa.
Chalan
graduated with honors from EMU in December, somehow able to
push past his profound family responsibilities and finish
his education. Nights of torment about his sister’s disease
have been replaced by nights of worry about how they will
afford food. Thin and unassuming, Chalan sometimes wears the
look of a shell-shocked man. He’s taken on more than most
26-year-olds can fathom and contends that he’s barely slept
since July, when his parents boarded a flight and the weight
of caring for his sister shifted squarely back onto his
shoulders. He’s obsessively online again, this time
researching immigration laws in a desperate attempt to get
his mother back into the U.S. He’s written congressmen,
talked to lawyers, and phoned embassies. He’s also job
searching in a brutal Michigan employment market with an
additional threat hanging over his head: he must find
employment in his field within 90 days of graduation or face
deportation. |
The
siblings have found a strong circle of support in Washtenaw
County. New people enter their lives daily. At times the
outreach swells then inevitably thins—a collective amnesia
as people go back to worrying about their own lives. Times
are tough for everyone. And still, Chalan and Sadeepa laugh.
They poke fun at each other. Three years into the fight,
they face each day the only way they know how—smiling and
grateful. That they can continually find joy in a situation
so heartbreaking should be a lesson to us all. It’s a gift
they inherited from their mother, a determined woman who
never let her children even think about giving up. So their
hope has never waned, their faith has never wavered. Deeply
religious— their father is Buddhist, their mother
Catholic—they trust that there is a plan for them, that
their fate is “in God’s hands.” “I’m hopeful that things
will be better soon for the whole family,” Sadeepa said
confidently. There hasn’t been a single “why us?” moment.
Not one. But would anyone have blamed them if there had
been? Broken pieces of dreams are all over the place, lives
going down paths they never could have imagined. And yet
they remain resolute. Optimistic. Their love for each other
holds them up. And they believe that good will come from
this.
Gratefully
reproduced with kind permission from Darcy Gifford
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