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Poonam Singh

Parents of a one-and-half-year-old infant in Odisha's Kandhamal district have sought help from Chief Minister Naveen Patnaik for the treatment of their son who is suffering from a rare illness called spinal muscular atrophy (SMA-Type 2).

The couple - Kulamani Rana and Tamlika Das - has begun a painstaking campaign to crowdfund the money required for a gene therapy treatment of their son Rajveer.

The baby’s health is deteriorating day by day and he urgently needs an injection that costs Rs 16 crore and has to be imported from US, to save his life. The doctors have given a deadline of four months for administration of the life-saving injection. As per sources, the injection loses its efficacy if administered to a child patient beyond 2 to 2.5 years.

"My child's life depends on this medication. The doctors have said that if treatment is not given soon, the child won't have a chance of surviving more than four months," the mother of the baby said.

Even though the parents of the baby have been getting help from across the country but it is impossible for them to raise such a huge amount in such a short span of time. So, they have sought help from CM Naveen Patnaik for the treatment.

On Monday, the couple had flown down from Bangalore, where their son is undergoing treatment, to Bhubaneswar especially to visit Naveen Niwas to seek help from the chief minister, however, they were stopped on their way by police officials.

Earlier, Rajveer's parents had also sought financial aid from the Health Department for the treatment of this life-threatening disease. Despite, their earnest appeal, they have not received a single penny from the government, alleged Rajveer's father Kulamani.

He also said that a Health Department official has said that the government can only give five lakh rupees for the treatment.

"We are unable to arrange such a huge sum in such a short period of time so we request our government to help us to save our child. Earlier also we had sought help from the government for my son’s treatment ", appealed Kulamani.

Currently, Rajveer is undergoing treatment at Bangalore Baptist Hospital, which is home to India’s only paediatric neuromuscular centre. 

Those who want to lend a helping hand to Rajveer can donate through PhonPe/GooglePay with Mobile no-6360371595.

Notably, SMA is a genetic neuromuscular disease that causes muscles to waste away. It destroys motor neurons in the spinal cord and brain so muscles do not receive nerve signals to move and they become weak and shrink.  Normally, a person diagnosed with SMA disease does not survive beyond two years.

(Edited By Suryakant Jena)

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