Tell U.S. President & Congress: Grant Wilson’s patient & family perm. residence for life-saving treatment

Started by: Eva, Philadelphia, Pennsylvania

If Sadeepa Munasinghe returns to Sri Lanka she will die.  In 2004, my friend Sadeepa moved to the U.S. to attend college in the hopes of becoming an OB/GYN.  But after one year of excellent grades, she grew gravely ill and the doctors were baffled.  For months, Sadeepa’s health grew worse until she could barely eat, sleep or walk.  Finally, in 2005 she was diagnosed with Wilson’s disease.

Wilson’s disease is a rare genetic disorder that causes the accumulation of copper in the eyes, brain, kidneys and liver.  Untreated, it is fatal.  And there is absolutely no treatment in her home country, Sri Lanka.  

Fearing for his sister’s life, Chalan Munasinghe reached out to the Wilson’s Disease Association, which recommended treatment at the University of Michigan.  Sadeepa initially spent 45 days at University of Michigan Hospital fighting for her life, bedridden and attached to feeding and peg tubes.  

Chalan and Sadeepa’s father quit his job, as the Sri Lankan Parliament’s Director of Catering and Housekeeping, and he and his wife flew to the U.S. on multiple-entry tourist visas.  With their parents’ help, Chalan could focus on his studies and Sadeepa’s mother could tend to her hygiene needs.  However in 2008, after a burglary of their Sri Lankan house sent Sadeepa’s parents briefly back home to tend to matters, they were prevented from returning to the U.S.  Despite filing and following visa procedures to the letter, the U.S. Embassy in Sri Lanka refused to permit Sadeepa’s mother to return to her ill daughter (she was denied a visa 5 times) and Chalan was once again forced to shoulder the responsibility of his studies and caring for his sick sister, all while struggling to afford food and rent.

Despite Sadeepa’s severe motor disabilities and the emotional trauma of being separated from her parents, Sadeepa remained a full-time student and graduated from Eastern Michigan University with honors.  With access to treatment and therapy, Sadeepa can live a long and healthy life.  Sadeepa's parents and brother play a vital role in her daily life as they help and support her to overcome the physical and psychological difficulties from Wilson's disease.  

Among the University of Michigan doctors recommending Sadeepa’s permanent status is Dr. Bettcher, “I request that you bring in a private member’s bill to grant Sadeepa, her parents, and her brother permanent status in the United States to fight this crippling disease as a united family.”  In 2012, a private bill was introduced and passed which secured permanent residence for a Nigerian national so that he could enroll in a U.S. medical school.  

Thank you,

Eva Weiss

For more information visit helpsadeepa.com

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