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Martha Susan Kabura (51) has come all the way from Kenya to India's premiere institute, AIIMS, hoping for a cure for her fatal ailment. But for the past week, she has been camping outside the hospital - in the sweltering heat - waiting for a call from a doctor. A half-paralysed Kabura has made a concrete slab outside the Out Patient Department (OPD) of the All India Institute of Medical Sciences (AIIMS) here her temporary abode ever since she came to the national capital with her sister July 9. Battling a mortal Neurofibroma (tumours in nervous system) disease for the last three years, Kabura and sister Beth Njoroje have been left dejected despite being assured an appointment with experts at AIIMS. 'We were assured by the Kenyan doctors and I even have the copy of the letter in which Sharat Chandra, head neurosurgeon at AIIMS, has given his assent that on arriving in Delhi we can meet him at AIIMS,' Njoroje, in her broken English, told IANS.
'But things are different here. Neither have the officials confirmed our appointment nor have they admitted my sister, who is in an extremely serious condition,' a teary-eyed Njoroje added. Neurofibroma are benign tumors in the peripheral nervous system which can result in a range of symptoms including physical disfiguration and pain to cognitive
disability. It is a genetic disorder that may be associated with multiple neurofibromas. Next to Njoroje, Kabura lies lifeless in the sweltering summer heat outside the general OPD, even as onlookers look curiously at the two sisters. AIIMS, one of India's premier research and educational institute, has around 2,200 beds and serves over 9,000 patients every day. On being contacted, officials from the neurosurgery department at the AIIMS denied having any 'knowledge' about any such patient. Kabura was wrongly treated by Kenyan health experts, which resulted in the left side of her body being paralysed.
The sisters were forced to come to the city after doctors back home could not treat her condition. They however, referred her to AIIMS and even got an appointment fixed with doctors here, which unfortunately never materialised. 'Everyday we have been begging for an appointment and this is despite the fact that we had fixed one before coming here,' Njoroje added. She stated that the institute administration also didn't allot any bed to her sister, which forced Kabura to lie out in the open amid heat, flies and at night, mosquitoes. (Read: Union Budget 2014-15: 4 new AIIMS to be established)
'I have fulfilled all the formalities of the hospital, and despite that the administration refuses to even acknowledge our presence here. Every day I try to reason with them, but they do not pay any heed to my requests and worse, the condition of my sister,' Njoroje said, while trying to keep the flies off from her sister's face. An agitated Njoroje said her sister is also suffering from other ailments that have made her treatment complicated. 'Kabura is also suffering from acute anemia and needs blood transfusion. The doctors and the hospital need to understand that if my sister is not admitted, she will die, for which I will hold them responsible,' Njoroje added. (Read: Union Budget 2014-15: AIIMS top gainer from budget)
'We come from a very humble background, and now the only money we are left with is barely adequate for Kabura's treatment and hopefully return back home,' the sister said. While Kabura lies on the concrete slabs instead of a much-needed hospital bed, Njoroje keeps a vigil on their luggage and other belongings. Their lack of fluency in English, the only language, which can help them communicate with people here, has made things worse for the sisters. 'I cannot speak proper English, hence I face a huge communication barrier adding to our existing woes,' she said.
Njoroje added that nobody has come forward to help them either. 'We are here only because the health care system in Kenya is not updated with the latest medical developments and lacks advanced equipment as well. This is why every year thousands of people in Kenya fall prey to the disease,' she said. '...I do not want my sister to be a victim of the same,' she whispered. However, the institute's indifference has not demoralised Njoroje and she is still 'hopeful' of getting an appointment. 'I will try again to talk to the doctors at the department of neurosurgery. I hope to soon get an appointment for my sister. I do not want my sister to die in a country which is medically advanced,' Njoroje sighed. (Read: AIIMS assault on docs strike called off)
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