Family seeks cure for genetic disease

Constantly ridiculed by his peers who call him “two-headed”, 12-year-old Raghubir Mudiyari of Bhedibathan, Babiyabarta-3 has lost all interest in his studies. Lamenting that even his teachers did nothing to help him stave off the torments, Raghubir said he no longer wants to attend school.

A fifth grader at local Janapriya Higher Secondary School, a huge lump of flesh which is round in shape has grown on Raghubir’s head. And it has been growing by the day. Apparently, Raghubir is not the only one from his family affected by the debilitating condition, as his mother, two sisters and a younger brother have also been suffering from this disease.

Diagnosed as neurofibromatosis, a rare genetic disease which causes nervous system tumors, Dr Ghana Shyam Jha of Koshi Zonal Hospital said that “the disease has no cure”.

“It is an inherited disease. However, despite the growth of tumors on the body, it does not pose cancer risk,” Jha said, adding that they cannot do anything for the patients with such conditions apart from consoling them that it would not pose a mortal threat.

While Raghubir’s mother Phool Kumari is in no condition to work due to the benign tumors on her head also spreading to her shoulders and other parts of her body, even Radhika, Raghubir’s elder sister, has been troubled after the disease started manifesting on her legs.

“I am worried as to how I should take care of my family, as our mother cannot work and following the manifestation of the disease in me, I too have trouble working in the fields,” Radhika lamented, adding that she has not

talked about her condition to anyone as she fears she might not get any work which could seriously affect their daily livelihood.

“When we think about our father and the debt he had taken to build this house, we don’t know what to make of our condition,” Radhika said. Their father, the only member of the family not affected by the disease, had passed away just a month ago.

Although senior surgeon Dr Sunil Chandra Adhikari at the Koshi Zonal Hospital said that the tumors can be cut down to ease the pain of the affected, the right kind of treatment still depends on the individual situation of the patient.

However, that too is not an option for the economically deprived Mudiyari family afflicted by the debilitating genetic disorder.

Published in The Kathmandu Post on: 2014-11-15 

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