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Even as Rajasthan Chief Minister Ashok Gehlot was inaugurating the first of its kind Rs 456.80 crore worth 116-metre IPD tower in SMS Hospital here, in a nearby hospital an 18-month-old child, whose parents have been pleading with the government to help save their baby, was struggling to survive.
Tanishq is struggling to get a lease of life as he is suffering from Spinal Muscular Atrophy Type-1 (SMA) which requires an injection worth Rs 16 crore.
The baby is presently admitted in JK Lon hospital in Jaipur. Since Friday night, he is having difficulty in breathing and was in an unconscious state when he was taken to Parbatsar Hospital where doctors said that the child faces blood deficiency and should be shifted to Jaipur- based JK Lon Hospital.
Tanishq is still in the ICU and is critical, said his father Shaitan Singh adding, "I have met Chief Minister Ashok Gehlot ji, he also assured help but till now no action has been taken regarding any kind of help. I have appealed to the government many times but till now we have not got any kind of help," he added.
Tanishq's father has been pleading with the government that rare diseases should also be included under the ambitious Chiranjeev scheme so that children suffering from such diseases can be helped and a separate SMA relief fund should be created so that children like his son battling with rare diseases can get some help.
The Chiranjeev scheme is a state run medical insurance scheme which provides free treatment to residents of Rajasthan for many diseases.
Now he has also requested that the government should get crowdfunding done at its own level.
Tanishq needs an injection for the treatment which is worth Rs 16 crore. Recently, a tax of Rs 6 crore was waived by Prime Minister Narendra Modi for the treatment of children suffering from this disease.
In fact, Nagaur MP Hanuman Beniwal has also raised this issue in the Lok Sabha.
The child's father further said that Tanishq cannot even stand/ sit on his own. "Even his chest muscles do not have enough strength to breathe properly. God has given him everything but not a gene which is made of a special type of protein, due to which all the muscles of the body work. Tanishq's life is incomplete without this gene. An injection worth Rs 16 crore is the solution to Tanishq's entire problem, but the cost of this one injection is Rs 16 crore, which is not easy for us," say Tanishq's parents.
Shaitan Singh, who worked as a lawyer in a small town like Parbatsar, said that his troubles started when his son was four-five months old. Initially the disease could not be traced, but later Dr. Priyanshu Mathur, confirmed that Tanishq was suffering from SMA.
IANS also contacted the CM's media team, however, there was no response from them. Later, many top leaders were also contacted but nothing moved.
"We are simply requesting the government to give our son a chance to breathe. If a project worth Rs 400 crore can be inaugurated in the state, a simple crowdfunding exercise can also be started where our son can get a lease of life," said Tanishq's father with folded hands.