Phulbani: Parents of a one-and-half-year-old infant suffering from a rare illness called spinal muscular atrophy (SMA-Type 2) in Kandhamal district have sought help from Chief Minister Naveen Patnaik for the treatment of their son.
The couple, Kulamani Rana and Tamlika Das, have started an intense campaign to raise funds for their son Rajveer’s gene therapy treatment.
Rajveer urgently requires an injection that will cost Rs 16 crore and has to be imported from the United States to save his life. The doctors have set a four-month deadline for administering the life-saving injection. The injection loses its efficacy after 2 to 2.5 years of administration to a child patient, according to sources.
“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,” Rajveer’s mother said.
His parents have been receiving help from across the country, however, it is not possible to raise such a huge amount within the stipulated time. Thus, they have sought help from CM Naveen Patnaik for the treatment.
On Monday, the couple flew down from Bangalore, where their son is receiving treatment, to Bhubaneswar particularly to visit Naveen Niwas and seek assistance from the chief minister, but they were stopped by police officials on the way.
Previously, they had requested financial aid from the Health Department. Despite their earnest appeal, Rajveer’s father Kulamani claims that they have not received a single penny from the government.
He also added 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.
Rajveer is currently receiving treatment at Bangalore Baptist Hospital, which houses India’s only paediatric neuromuscular centre.
One can donate through PhonPe/GooglePay with the mobile number 6360371595 to help Rajveer.
It is pertinent to mention that SMA is a genetic neuromuscular disease that causes muscles to deteriorate. It destroys motor neurons in the spinal cord and brain, causing muscles to become weak and shrink as a result of not receiving nerve signals to move. Normally, a person with SMA disease does not live past the age of two years.