After a girl from Maharashtra, a 4-month-old child from Gujarat contracted SMA-1. The family pleaded for help.
- Family pleads for son's treatment in Mahisagar
- The family sought help to treat their son
- It costs Rs 22 crore to order injections from the US
The arrival of Valsoya in any family, rich or poor, is a source of immense joy. Whether it is a son or a daughter, the relatives have been dreaming and making an imaginary plan for his future since his arrival. But sometimes naturally occurring circumstances bring trouble for relatives. A similar situation has happened in the life of Rajdeep Rathore of Kanesar village in Mahisagar district and currently living in Godhra.
Rajdeep Singh Rathore's son Dhairyaraj Singh Rathore is only 3 months old. At first glance, it looks quite healthy. But the concerned parents showed the doctor that they saw a physical change in only one and a half months of birth. In which Dhairya Raj has been diagnosed with a disease called SMA-1. However, he was shocked to learn that treatment for the disease was not possible in India.
After this, Rajdeep Singh has approached an NGO and started raising funds for the treatment of Dhairya ... which is currently accumulating a good amount of funds ... On the other hand, there is only one year left to save this innocent.
An injection was ordered from America for Kira suffering from the same disease as Dhairyaraj Singh
There was a case of a 5-month-old daughter named Tira suffering from SMA Type 1 disease. Its treatment is possible only with Zolgensma injection from America. This is an estimated Rs 16 crore. On which an estimated Rs 6 crore tax has to be paid separately. Then the price goes up to Rs 22 crore. But on a letter from former Maharashtra Chief Minister Devendra Fadnavis, Prime Minister Narendra Modi waived the Rs 6 crore tax. If this baby is not injected, she can live up to 13 months. However, it is not possible for a common man to buy an injection worth Rs 16 crore. Then a page was created on social media and crowdfunding started on it. Where a good response was received and so far Rs 16 crore has been collected. Now hopefully the injection can be purchased.
What is SMA disease?
Spinal muscular atrophy (SMA) is a disease in which the body does not have protein-producing genes. In which the veins and nerves seem to be depleted. The activity of the nerves of the brain also seems to decrease. Because all the veins of the head are operated, there is difficulty in breathing and chewing food. There are many types of SMA, but Type 1 is the most serious.
Why does injection cost Rs 22 crore?
- Zolgenjma is a one-time injection given to a child under 2 years of age
- This injection is given for a disease called spinal muscular atrophy
- This is an injection of a disease that stops protein production in a newborn baby
- The disease kills the baby within a few months
- Zolgenzma forms the world famous Norvatis Pharma Company and has a monopoly
- Norvatis bought the injection formula from the American company Avexis for a large sum.
- The company was helped by the British government and charities to make the injection
- Relatives and friends of patients with the disease have also helped to create injections
- This replaces the body's dead genetics with a single dose of injection
- The cost of the injection is determined based on how long the patient's life is, according to the company
- The company is claiming that the company's profit from these injections is negligible
- Norvatis allows this injection to be purchased in 5 year installments in Britain
- Some finance companies also refund the patient if the injection does not work
