World’s most expensive medicine, 3 year old innocent and incurable disease: finally blooming face, 16 crores raised through crowd funding, Hyderabad 3 year old administered world’s most expensive medicine
The world’s most expensive drug treated a 3-year-old innocent
Hyderabad : Whatever be the disease, it breaks not only the sick but also his/her family members and how despair surrounds him from all sides when the disease is incurable, nothing to say. A Hyderabad family was also grappling with a similar darkness of despair when they came to know that the three-year-old with whom they are weaving future dreams is suffering from an incurable disease and crores of rupees have been spent for its treatment. needed. In the end, the innocent was treated with the world’s most expensive medicine and the smile returned to the faces.
This child is suffering from Ayansh Spinal Muscular Atrophy (SMA), for which he was given ZOLGENSMA injection on 9th June. This is a single dose intravenous injection, which costs Rs 16 crores. This amount was raised through crowd funding. The drug is not available in India, so it was imported from the US, which attracts an import duty of about Rs 6 crore. But the government forgave it.
This injection was given to the innocent at the Rainbow Children’s Hospital in Secunderabad. In the last 10 months, experts here have treated three such cases. The child was treated under the supervision of Pediatric Neurologist Dr. Ramesh Konanki.
This serious disease damages genes
SMA is a neuromuscular disease in which the SMN1 gene is damaged. In children suffering from this, the muscles of the upper and lower limbs go on weakening, which in turn leads to difficulty in breathing and swallowing. According to an estimate, one in 10,000 children suffer from it and at present around 800 children in India suffer from it. Most of the children suffering from this disease die within two years due to lack of treatment.
ZOLGENSMA is a single dose intravenous injection gene therapy for the treatment of this disease, in which the destroyed SMN1 gene is replaced with an adenoviral vector. Earlier in August 2020 and April 2021, two children were treated with this medicine at this hospital in Secunderabad. The condition of both the children is said to be better at present.
smile back on faces
Ayansh’s parents’ happiness knows no bounds after being given this lifesaving injection. Father Yogesh Gupta thanked the hospital and all the donors, due to which his child got a new life today. Ayansh’s parents raised the money through crowdfunding, with ImpactGuru contributing significantly. After this, the Union Finance Ministry waived off the import duty of about Rs 6 crore on this.
ImpactGuru raised Rs 14.84 crore through crowd funding for Ayansh. 62,450 donors gave help for this, in which the maximum amount of Rs 56 lakh was given by a single donor. Celebrities from cricket to film world and other fields also helped in this. Celebrities like Virat Kohli, Anushka Sharma, Arjun Kapoor, Sara Ali Khan, Ajay Devgan, Anil Kapoor came forward to help the innocent.
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