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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.

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.

 

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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