In early 2014, 12-year-old Janely began to complain of pain in her arms and legs. Her parents weren’t concerned at first, but a few months later their daughter became gravely ill. She spent two weeks in the ICU at the Santa Cruz public children’s hospital undergoing innumerable tests before doctors diagnosed her with Myasthemia Gravis (MG). MG is a rare autoimmune disease that affects the neuromuscular system, producing sudden muscle weakness that can be life-threatening without rigorous treatment. Because of limited options for her in Bolivia, the doctors advised Janely’s parents, Franz and Petrona, to take her to Argentina for further studies and to confirm the diagnosis.
Janely’s condition was eventually somewhat stabilized by a cocktail of medications, but drugs did not provide a complete or reliable solution. However, as part of her MG diagnosis, doctors confirmed that Janely had a thymoma, which is a tumor in the thymus gland. The thymus gland plays a role in the early development of the immune system. About 10% of patients with MG are found to have a thymoma, and thymectomy (removal of the tumor along with the thymus gland) can result in complete remission of MG in some cases.
Janely’s family lives in a very humble, two-room, unfinished home. Franz supports the family of six as a painter, earning around $300 dollars a month. A large proportion of his income goes to cover Janely’s many medications. The year of tests and treatments and the trip to Argentina had plunged the family into financial crisis. They depleted all their resources to try to help their daughter, and no money was left to pay for surgery at a private hospital. However, when Janely was diagnosed in 2014, no public hospital facilities existed in the country for children’s heart surgery. Because the thymus gland is located in the front portion of the chest, the surgery requires accessing the chest through a thoracotomy, preferably performed by a skilled and experienced heart surgeon. Fortunately for Janely, a year after her initial diagnosis, the Santa Cruz children’s hospital had established facilities to allow them to take on her surgery. Solidarity Bridge partner and pediatric cardiac surgeon Dr. Roberto Pacheco successfully performed Janely’s thymectomy there on March 13, 2015.
The ability to provide this surgery in a public children’s hospital is a huge step forward in Bolivian health care. Franz and Petrona are very grateful to all the doctors and other hospital staff and to all those from Solidarity Bridge who helped make Janely’s surgery possible, including Isaac and Rene Goff for the critical financial support.