Spinal muscular atrophy: 2-yr-old who received Rs 18 cr worth medicine 4 months back recovering

R Athira

1 min read
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Navaneeth with mother Anushree and father Santhosh

Thiruvananthapuram: Keralites recently raised Rs 18 crore for the treatment of Kannur native Muhammed, the one-year-old child who is suffering from a rare disease called spinal muscular atrophy. There is another two-year-old child who received the expensive medicine and his condition is improving slowly.

Navaneeth, son of Karunagappally native Santhosh and Anushree, received the medicine Zolgensma (Onasemnogene) for spinal muscular atrophy only 4 months ago. Now the boy has started walking slowly. He is able to hold his neck steadily for 5 minutes and walk with the help of walker. Though the doctors claimed that the medicine can only save his life, his condition is improving.

Vaccine for free

Santhosh, an assistant engineer at KSEB, and Anushree, a VSSC staff, inquired about the expensive medicine and came to know that those who are selected in the Global Managed Access programme of AveXis company will get the medicine for free.

Following this, they filed an application to the medicine manufacturing company in UK in October 2020. Navaneeth was subjected to several tests to be eligible. The family received the notification in January this year that Navaneeth has been selected for the free medicine. The vaccine was administered at KIMS hospital on February 26.

The doctors had warned that the medicine may affect the functions of kidney and liver. Navaneeth is undergoing medical reviews every month. Dr D Kalpana at KIMS hospital gave the first phase of treatment. Currently, treatment in addition to physiotherapy is continuing under the leadership of Dr Shankar and Dr Shahanas Ahamed of SAT hospital.

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