Keralites made history by amassing Rs 18 crore in just seven days, for the treatment of Muhammad, a one-year-old boy who has been diagnosed with a rare genetic disorder called spinal muscular atrophy. Meanwhile, Navaneet, a native of Thiruvananthapuram who had received the expensive medication, around four months ago, has been showing significant improvement in his condition. If the kindness of thousands of people has helped Muhammad, it was sheer luck that won Navaneet the life saving drug. Navaneet’s parents spoke to Manorama News about how their son got the drug.
Navaneet was diagnosed with spinal muscular atrophy after he had turned one. The boy didn’t have the SMN 1 gene that helps babies move their limbs. As it is a progressive disease, the child’s health kept deteriorating. Navaneet became bedridden as he couldn’t even move his head and the backside of his head looks as if it has been pressed inwards. Navaneet had undergone physiotherapy to retain the movement of the muscles. Even though the doctor had spoken to the parents about the medicine that costs Rs 18 crore, Navaneeth’s parents couldn’t even think of affording such an expensive medication.
It was Dr. Kalpana of the KIMS Hospital who had informed the parents about the access program for kids who are diagnosed with muscular atrophy. Kids who are registered in this program could win the miracle drug worth Rs 18 crore through a lottery system. Navaneet underwent the tests that were required to include his name too in the lucky draw. In October 2020, his doctor was informed that Navaneet’s name had been included in the lottery system. Some more tests were done after the parents were informed, on 19 January 2021, that Navaneet would get the life saving drug. On 26 February, the child received the medicine. Even though the drug doesn’t promise complete recovery, it would surely save the child’s life.
Navaneet’s parents say that his health has significantly improved since receiving the medicine. Earlier, he wouldn’t move an inch if he was laid on the floor. Now, he would move until the end of the mat and come back. They feel that his muscles have become stronger than before. He moves his hands and can hold toys that aren’t too heavy.
After getting vaccinated, the patient has to undergo regular weekly and then monthly follow – up tests and treatment. Navaneet’s case surely lights a ray of hope to little Muhammad and hundreds of other children who await the expensive gene therapy.