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Poonam Singh

A couple from Odisha's Kandhamal district has been running from pillar to post to arrange money for treatment of their one-and-half-year-old son who is suffering from a rare genetic disorder. 

The couple - Kulamani Rana and Tamlika Das- have returned empty-handed from SCB Medical College and Hospital, Cuttack after the doctors said that there is no treatment available for the disease.

According to sources, the couple's son Rajveer is suffering from a rare genetic condition of spinal muscular atrophy (SMA), in which a person can't control the movement of muscles due to loss of nerve cells in the spinal cord and brain stem.

The infant's health is deteriorating day by day and he urgently needs a Zolgensma injection, which costs Rs 16 crore and has to be imported from the US, to save his life. The doctors who were treating Rajveer in Bangalore have given a deadline of four months for the 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.

Notably, the couple has begun a campaign to raise funds worth Rs 16 crore for a gene therapy treatment of their son Rajveer. However, it is impossible for Rajveer's parents 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.

Rajveer's mother Tamalika to save the life of her son has been helplessly knocking on the doors of Odisha Chief Minister Naveen Patnaik seeking help. Recently, she had staged a dharna outside the Naveen Niwas on December 2. Later, Bhubaneswar DCP, doctors reached the spot and pacified the parents and admitted the child to Capital Hospital, later they had shifted Rajveer to SCB for treatment.

However, doctors at SCB said that the hospital does not have the required facility to treat the child. After being sent back by SCB authorities, the hapless parents are now desperately trying to arrange money for Zolgensma injection which is the only treatment available for their son's condition.

"My child's life depends on this injection. So we request the State government and 4.5 Odia people to come forward and help us to save our child. A little help from all can save our son," said a teary-eyed Tamalika.

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

(Edited By Ramakant Biswas)

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