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Bilaspur2 hours ago
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- Srishti admitted to Apollo Hospital, Bilaspur, has a rare disease called spinal muscular atrophy
14-month-old Srishti is on ventilator at Apollo Hospital in Bilaspur, as she has a rare disease called spinal muscular atrophy. Because of this, Srishti has been struggling for life for the last 8 months. Has been on ventilator for 47 days now. Srishti also has to inject Rs 22.5 crore like Mumbai’s Tira Kamat. However, Teera’s parents raised 16 crores from crowdfunding and Prime Minister Narendra Modi waived tax of 6 crores. Here, in 13 days only 3 lakh 29 thousand rupees have been arranged for the universe.
Srishti with her mother. Doctors have advised Srishti to inject Jolgensma.
Alive with the help of machines
The disease of the universe is such that its life cannot be saved by medicines available in the country. In such a situation, doctors have advised the girl to inject jolgensma. The condition of the child has become more serious. Doctors say that he is alive with the help of machines.
Everything went well for 4-5 months, then hands and feet stopped working
Srishti’s father Satish Kumar is originally from Kanke Kala Sikki village of Palamu district in Jharkhand. He works at the coal mining company SECL based in Deepka, Korba. He told that Srishti was born on 22 November 2019. All was normal for four to five months. Suddenly, Srishti’s hands and feet stopped working. After examination, the doctor said that the neck is not working properly. See an expert for treatment.
Help of just three lakh rupees in 13 days
Satish says that the disease did not catch up even after showing several experts in Raipur in June. At the same time, the condition of the world became worse. Then in December he was taken to Vellore (Tamil Nadu), where the SMA Type One test was done. Its report came on 23 January, but on 30 December, the condition worsened, and admitted Srishti to Apollo. Satish has sought financial help from the Chhattisgarh and Jharkhand governments. At the same time, Impact Guru Organization has raised Rs 3 lakh 29 thousand 828 in 13 days from crowd funding.
What is SMA disease?
Children with spinal muscular atrophy (SMA) disease do not have protein-producing genes in their bodies. This causes the muscles and nerves to end. The activity of the brain muscles also starts decreasing. All muscles operate from the brain, so there is difficulty in breathing and even chewing food. There are many types of SMA, but Type 1 is the most serious. So far 5 people in the country and around 600 people in the world have been injected with Jolgensma for the treatment of SMA disease. Those who felt they got 60% only.
Why is this injection so expensive?
Doctors say that Jolgensma makes the injection Novartis from Switzerland. One dose of this can be used to cure a life-threatening genetic disease. Novartis injection costs Rs 16 crore. It incurs an import duty of Rs 6.5 crore.