Name: Jahnavi Age : 14 years Education: 9th class, Atkinson school, Vijayawada.
She is a good kuchipudi classical dancer. She performed in Limca Book of records. Disease: Acute Intermittent Porphria ( this is very rare disease related to neurology) Present Treatment at: NIMS, Hyderabad. Father: Vujjuri KanneswaraRao Contact Number : 9246485439 Occupation: Automobile shop owner. (sold it for girl treatment) Mother: Sridevi Occupation:HouseWife Relatives in contact: Hari Krishna ( KanneswaraRao's sister husband) Contact Number: 9849233649. News Source: Eenadu news paper (24/03/2010) Link: http://www.eenadu.net/archives/archive-24-3-2010/story.asp?qry1=26&reccount=27 Bank details as follows: Name: N. HARI KRISHNA Bank: ICICI Bank A/c No: 007501006488 Branch: SR Nagar Case Details: By looking at the newspaper our TMAD members P.Chandana along with Sathya krishna called the girl uncle(Hari Krishna). He sent us a few documents i am attaching them along with this mail. Today evening i went to NIMS and spoke to the girl father.He gave me the fallowing details. "The girl health was very fine till 12th February. On that day night she got fits! and was admitted at Mythri hospital Chandanagar, Hyderabad.[ A few days back the girl came to hyderabad for a kuchipudi show]. The doctor treated at Mythi hospital is Mr.Rathna Kishore (Neurologist). At first he couldn't identify the disease. As there was no improvement in her health condition the girl was shifted to same Mythri hospital Mehadipatnam branch. On total for Mythri hospital they spent 5lac rupees. She was there till 2nd March and lost her voice. Finally the doctor suggested NIMS. On 3rd March she was admitted at NIMS. On 9th March NIMS doctor Professor Meena (Neurologist) decided that the disease is Acute Intermittent Porphria. To cure the disease the girl needs to be given the drugs "Normosang". They got it from France as it is not available in India. It cost is 2400 Euros ( Rs. 5,00,000/-)!. Now the doctors are saying one more dose has to be given. After joining in NIMS they have been spending around 3lacs for medicines, per day medicine cost is 20,000 rupees. For other charges to the hospital they still have to pay 1.75lacs. Very unfortunately two times once at Mythri and another time at NIMS the girl was given wrong injections by junior doctors because of which the girl health completely spoiled. So finally the doctors realizes and kept special boards at her room mentioning what are the medicines not to be given to the girl. By looking at the newspaper a few persons called her father and deposited Rs.20,000/-. Note: All the above case details are told by girl father to me. I didn't get the chance to meet the doctor.(Prof.Meena Neurologist). When i told the case details to our tmad member B V N Anil kumar, he asked me 3 very important questions for which i don't have answers(for the time being). Q1) What is the permanent cure for this disease ?Q2) Who has the technology to cure this (in India or outside India) ?Q3) Are there any NGO's/hospitals that have worked on this case ? At least for the first 2 questions we should have answers. If any of us can find some reference of NIMS hospital doctors, then we can meet Dr.Meena(Neurologist) and can know the details about permanent cure for the disease. ThanksSivaji.(9908637414) Your Mail works best with the New Yahoo Optimized IE8. Get it NOW! http://downloads.yahoo.com/in/internetexplorer/
