Though Sadeepa Munasinghe, an Eastern Michigan University alumna with a degree in simulation, animation and gaming, has her face forced into a permanent smile, her overwhelming kindness and warm joy are caused by her genuine happiness.
Munasinghe will laugh and agree that being sick is one of the worst things in the world, second only to being sick and not knowing what’s wrong with you. There’s an antagonizing fear that accompanies not knowing what’s wrong with your body and watching as doctors shrug and scratch their chins at you.
Munasinghe has had to live this experience. When Munasinghe was about 18 years old, she started to come down what she later found out to be Wilson’s disease, or hepatolenticular degeneration.
The effects of Wilson’s disease are buildups of copper in one’s organs that can’t be disposed of with other waste products.
When Munasinghe came from Sri Lanka to the U.S. to attend the University of South Alabama, studying biomedical sciences, she had no idea of the hard times ahead of her.
When Munasinghe first told her mother she was sick, she said her mother didn’t believe her.
“I thought she just was homesick,” Pauline Munasinghe said regarding her daughter. “It’s strange to me, like a dream. I thought I was coming to take her to Sri Lanka. I couldn’t believe it.”
In Alabama, Munasinghe said the doctors were clueless about what she had. It wasn’t until her older brother, Chalan Munasinghe, looked up Munasinghe’s symptoms on the Internet that the family knew what was wrong with her.
The doctors started giving Munasinghe a drug called penicillamine. While this drug was supposedly standard for dealing with Wilson’s disease, it seemed to be making Munasinghe worse.
“They were testing on me, not treating me,” she said.
Munasinghe’s muscles started to freeze, making speaking impossible and locking her finger and hands so she couldn’t hold a pen.
The Munasinghe family found out the preferred place of treatment was at the University of Michigan hospital. Chalan and Munasinghe both enrolled at EMU, given the stipulations on their visas were they had to be enrolled as full-time students.
When Munasinghe arrived at U of M hospitals, she hadn’t eaten or had anything to drink. She was dehydrated and couldn’t swallow her own saliva, much less food. Her mother sat with her day in and out, barely sleeping as she watched over her suffering daughter.
Pauline’s work didn’t stop at Munasinghe’s hospital bed, either. Pauline went with Munasinghe to classes, helping her daughter take notes since Munasinghe couldn’t hold a pen. However, problems came up when lab work was required for the major. Munasinghe was encouraged to pursue a different field of study.
Though Munasinghe couldn’t physically do a lot of work, her mind remained sharp. Through all of her struggles, she still managed to graduate from EMU with a 3.97 GPA. Considering all Munasinghe has accomplished, its no surprise she still dreams of working in pharmaceuticals someday.
“I wanted to work with patients since I was 6 years old,” she said.
As Munasinghe has been struggling to re-learn how to speak and move her body, her family has been struggling with other concerns. Sri Lanka does not have the medical resources for Munasinghe, meaning it would be a death sentence to send her home.
Her parents are having difficulty getting full citizenship and are relying on visas, costing over $2,000, and lawyers to allow them to stay and take care of their daughter.
Chalan has been the source of family income for the past few years, but what the family really wants is for Munasinghe’s father or mother to gain job sponsorship. This would allow the couple the visas needed to stay with their daughter and work to pay off the increasing bills.
The Munasinghes ask that anyone who knows of a job opportunity contact them. The Munasinghes ask that, even if you don’t know of a job, if you could contribute by signing their petition to make it so the family can gain permanent residence.
“There are some there are bumps in the way,” Munasinghe said. “But I truly believe that if you accept the bumps as it is, you can go over it. Happiness can always conquer it. I have no idea what God has for me next. But God has always been in our lives and he has always provided.”
You can contribute and learn more about Munasinghe, her family and her disease at helpsadeepa.com.
Does anyone else notice how there are ZERO specifics ...