SMA Type 1 Disease: Anamaya is suffering from Spinal Muscular Atropy Type-1 (SMA) disease of Sultanpur district of Uttar Pradesh. Anmay is only 8 months old. Anmay’s father Sumit and mother Ankita are knocking on every door to save their child’s life. Ankita says that she has to pay more attention to Anmay than normal children. Like all children can support themselves, raise themselves but Anmay is not able to do anything by himself. He cannot raise his hands, cannot balance his head.
The child’s mother Ankita tells that its activity is very less. Then it was shown in Lucknow but nothing was known, then it was shown at Sir Ganga Ram Hospital in Delhi and after diagnosis it was found that it is a rare disease named SMA type 1.
What is the cost of injection?
Doctors said that the only treatment for this is an injection named Onasemnogene Abeparvovec-xioi, which costs Rs 16 crore. Ankita tells that due to this disease for Anmay, a new problem starts, she said that Anmay is having problems in swallowing along with breathing. They fear that type 1 children may never be able to celebrate their 2nd birthday. They have no future of their own.
Such children can be saved within two years. He said that I appeal to the people of the country that if the injection is delayed, then there will be a problem in recovery. Whoever is capable, come in our support and contribute in this campaign so that lives can be saved. He said that we will not be able to do this alone.
‘Children are helping by breaking the piggy bank’ Anmay’s father said that in order to save Anmay, small children are helping Anmay by breaking the piggy bank. Anmay’s father Sumit works in UCO Bank. He told that according to him, a fund of Rs 1 crore 93 lakh has been collected so far.
He said that we are going to everyone for help. He said that social organizations, MLAs, CM Yogi Adityanath also took cognizance and called and met. Some MPs have also written letters to the PM. We are knocking on every door from where we can get cooperation, people are also coming forward and the campaign to save Anmay is going on very fast.
Which people have supported? From film actor Sonu Sood to comedian Surendra Sharma and AAP MP Sanjay Singh, many people have supported. Along with this, at the local level, small children are giving money by bursting piggy banks.
Story kept in BHU In BHU, Shantanu Maharaj has kept the story for a week only for Anmay, whatever money will come from it will be invested in this. There is a QR code in the shops. The public is helping, but if some big people of the society come forward, then money can be collected quickly.
When was the disease detected? Sumit Singh says that doctors say that when the child is born, an injection should be given immediately, but Anamay’s disease was detected after a long time and his diagnosis started late.
What is the advice of the doctors? Doctors say that the degeneration of his body will continue and if it takes more time, the recovery will be very slow despite the injection. The cost of this injection (Rs 16 crore) is very high. If people cooperate, this child’s life can be saved.
The doctor is advising that proper physiotherapy should be done and for the problem of breathing, contact the pulmonologist. According to father Sumit Singh, the money of the fund is coming in this account and people are helping by sending money in this. Whose information is – Account number – 222333010166133IFSC CODE-RATN0VAAPISAccount holder – Anmay Singh Bank – RBL BANK
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