Balurghat (West Bengal): A nine-month-old Rajarshi Mondal (name changed) of West Bengal's Balurghat in South Dinajpur has been suffering from a rare disease called Spinal Muscular Atrophy. However, the treatment for the rare neurological disorder is quite expensive and requires an injection that costs Rs 17.5 crore.
According to sources, if Rajarshi is not treated by the time he becomes two years old then he may die. Rajarshi's father Dhruba Mondal and mother Sangeeta have already posted a message on social media asking for financial help to save the life of their only son. The mother said that only the Prime Minister can save her child.
Dhruba Mondal, a resident of the Mangalpur area of Balurghat town, works in the Indian Army and his wife Sangeeta Mondal is a homemaker. Since Rajarshi's birth, the family noticed abnormalities in the child. The child's family went to a paediatrician in Balurghat last April where the child was diagnosed with a neurological disease called spinal muscular atrophy.
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The toddler was first taken to Kolkata and then to AIIMS in New Delhi for proper treatment. However, after the tests, the doctors confirmed the same disease. They said that without treatment, many affected children die before they turn two years old. Children with this disease can sit, but it becomes difficult for them to stand or walk without assistance.
Doctors said that spinal muscular atrophy (SMA) is a genetic disease, which specifically damages motor neuron nerve cells in the brain and spinal cord. Motor neurons control the movements of arms, legs, chest, throat, mouth and tongue. Along with this, motor neurons also control muscle movements such as walking, talking, swallowing and breathing.
Doctors said there is only one injection used for this disease, which is called Zolgensma, which costs Rs 17.5 crore and is not available in India and has to be imported from abroad. The child's father Dhruba Mondal appealed for help on social media for the treatment of the rare disease of his son.
"The report sent by AIIMS Delhi confirmed the disease. But, I don't know how to save my son's life. I do not understand how can we collect such a huge sum. Only Prime Minister Narendra Modi can help save my son's life," Sangeeta Mondal, the mother of the child said.
