Odisha Couple Seeks To Raise Rs 16 Crore To Treat Baby With Rare Genetic Disorder

Parents of a one-and-half-year-old baby in Odisha's Kandhamal are seeking financial support for the treatment of their son who is suffering from rare spinal muscular atrophy (SMA). 

The couple has begun a painstaking campaign to crowdfund Rs 16 crore for a gene therapy treatment of their son Rajveer. They have also sought financial aid from Odisha government for the treatment from this life threatening disease.

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

Following the diagnosis, Rajveer’s parents, Kulamani Rana and Tamlika Das, have started a crowdfunding campaign, seeking financial aid from people to save their son from this rare genetic disorder.

According to the couple, the baby’s health is deteriorating day by day and urgently need an injection that costs Rs 16 crore and has to be imported from US, to save his life.

Unable to arrange such a hefty amount on our own, Rajveer’s parents have been running from pillar to post, trying to arrange the amount to avail the injection.

"We are unable to arrange such a lofty sum on our own and therefore we request Odisha government and the people of the State to help us to save our child. It is our humble request that everyone donate some amount for my son’s treatment ", appealed Rajveer’s parents.

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)