Bhopal. The girl, who studied for 14 years and was an expert in art, is suffering from a rare disease called hereditary. Due to which suddenly there is swelling in his nose, ears, brain and other parts of the body. Then seizures come with pain. This is the reason that after class 6, the studies of the 16 year old girl have been stopped for two years. According to the family, Takzyro injection worth Rs 28 lakh is the last treatment. The family has collected Rs 18 lakh with its own capital, government assistance and the help of people. But Rs 10 lakh is less. Which they have to arrange before October 12, because the girl is proposed to get the injection on 18th.
The girl is a resident of Kachnaria village of Berasia.
The girl is a resident of village Kachnaria of Bairasiya tehsil. The family members of the girl got treatment from Bhopal to many districts of the state. During this period, the girl was diagnosed with many other diseases ranging from neuro. Treatment also started but there was no improvement. In such a situation he went to Delhi. Where critical disease expert Dr. Arun Verma identified this rare disease in the girl. The girl is in Delhi for the last 6 months.
Only 5 such children in the country
The girl’s father works as a security supervisor in a private company in Roorkee. He has already spent a substantial amount on his daughter’s treatment and it is almost impossible for him to arrange funds for the injection. According to the girl’s father Anshuman Mishra, a society works in America to provide treatment to children suffering from hereditary angioedema disease. Only 5 children from the country are registered in that society.
Three doses will come from America for 28 lakhs
For the final treatment of the disease, the doctor has proposed to administer Takzyro injection of GNH Pharmaceuticals USA, a subsidiary of Takeda Pharma Japan. Whose booking has been done. But the family is short Rs 10 lakh.
You can contact on these numbers for help
7618000865, 7388807778
What is the disease?
Hereditary angioedema disease is related to the immune system. It can be genetic and it can also be a new patient. If left untreated, the swelling can reach the brain, leg joints and spine and make the patient’s condition serious. Low levels or improper functioning of C1 inhibitor protein is the main cause of this disease.
-Dr. Sanjay Aggarwal, Head, Research & Development Department, Jubilant Generics Limited, Roorkee
