Ludhiana, July 15., 2023: A campaign namely “Let's Save Kanav - Help Before It's Too Late” launched under guidance of MP Sanjeev Arora with the help of city-based NGOs Krishna Pran Breast Cancer Charitable Trust and Samvedna Trust has ultimately yielded positive results. About one and a half years old Kanav hailing from New Delhi has been treated at Sir Ganga Ram Hospital, New Delhi.
Giving this information here today, Arora who runs Krishna Pran Breast Cancer Charitable Trust said Kanav Jangra was treated a day before yesterday by Dr Ratna Dua Puri (Sir Ganga Ram Hospital). Kanav was given gene therapy called ZolgenSMA which costs Rs.17.50 crore (2.1 million USD).
Adding, Arora said one pack of gene therapy, ZolgenSMA (Made in USA) was imported from Durbin PLC (Part of Uniphar Group), UK at a net price of 21,25,000 US Dollars (around Rs. Rs.17.50 crore) in June this year. Ministry of Health and Family Welfare Directorate General of Health Services has given custom duty exemption certificate (CDEC) on import of this life saving drug/medicine on receipt of Kanav’s application dated May 25, 2023. Arora said it was certified that the drug is being imported by Kanav Jangra for self use and is life saving drug exempted from payment of custom duty was recommended.
Today, Arora long with his family members met Kanav and his parents Amit and Garima in New Delhi and blessed Kanav for his long life. Kanav’s parents thanked Arora for his efforts. Kanav's family members got emotional while discussing how Kanav has been saved with help of all involved.
Arora said Kanav was discharged after the treatment. However, Kavan will be under observation of doctors for next few months.
Arora praised his party's leader in Rajya Sabha Shri Sanjay Singh who introduced Amit to him. After that, city-based NGOs Krishna Pran Breast Cancer Charitable Trust and Samvedna Trust had launched “Let's Save Kanav - Help Before It's Too Late” Campaign to save the life of Kanav. The campaign was launched to help raise funds for Kanav's treatment for a rare Genetic disease SMA (Spinal Muscular Atrophy) Type 1. This is a genetic disease that destroys the nerves responsible for controlling most of our body movements.
Kanav’s parents- Amit and Garima, belong to a middle-class family and they were not in a position to afford costly treatment. As such, city-based NGOs had made sincere and concrete efforts requesting people to consider the appeal for donation on humanitarian grounds and donate open heartedly to save a precious life. The donation made were qualified for CSR Act.
Member Parliaments (MPs) Raghav Chadha, Hans Raj Hans, Sanjay Singh, Vivek Tankha, Sanjeev Arora, Ramchander Jangra, Priyanka Chaturvedi, Ravneet Singh Bittu, Sant Balbir Singh Seechewal, Pravesh Verma, Ashok Mittal and Manish Tewari also endorsed Kanav's cause.
Celebrities, including Kapil Sharma, Sonu Sood, Farha Khan, Vidya Balan, Chunkey Pandey, Rajpal Yadav, Vishal Dadlani, Ali Asgar, Bharti Singh, Pankaj Tripathi, Shakti Kapoor and Kiku Sharda, also supported Kanav's cause.
Arora said he is going to take up the matter in Parliament to help in getting medicine at affordable price. Also, he would request for spending resources in Research & Development so that treatment can be cheaper.
Arora thanked all those who extended their support in saving Kanav’s life.
Photo Captions:
1. Kanav being given gene therapy.
2. Sanjeev Arora, MP along with his family members meet Kanav and his parents on Saturday.
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