Rajasthan Director General of Police Utkal Ranjan Sahoo played guardian to police force. He has come forward to raise fund for treatment of rarest of the rare disease – Spinal Muscular Atrophy (SMA) – happened to a kid of sub inspector Narendra Sharma posted in Bharatpur range. The cost of injection needed for the treatment around ₹ 17.5 crore.
Utkal Ranjan Sahoo has requested the entire ‘police family' through district SPs to donate generously to meet the cost of expensive treatment of this disease.
Utkal Ranjan Sahoo sends email to district SPs
In an email sent to all district SPs, he has mentioned that Hridayansh, a one year and eight months old kid of sub inspector Narendra Sharma, has been fighting with Spinal Muscular Atrophy (SMA).
Utkal Ranjan Sahoo wrote that the only treatment to this rarest of rare disease, as per doctors, is Zolzensma injection, which is kind of gene therapy and only hope for children suffering from this rare disease.
Sahoo further wrote that the maximum age, as per doctors, for implanting this injection is upto 24 months.
“There is very little time left to administer the injection to the kid. The cost of injection is around ₹17.5 crore,” Sahoo wrote.
Utkal Ranjan Sahoo further requested the extended police family to contribute generously so that the injection may be made available in the given frame of time.
What is Spinal Muscular Atrophy (SMA)?
Spinal muscular atrophy (SMA) is a genetic disease affecting the central nervous system, peripheral nervous system, and voluntary muscle movement (skeletal muscle).
The primary symptom of SMA is weakness of the voluntary muscles. The muscles most affected are those closest to the center of the body, such as those of the shoulders, hips, thighs, and upper back. The lower limbs seem to be affected more than the upper limbs, and deep tendon reflexes are decreased.
Some times muscles used for breathing and swallowing are affected, resulting in abnormalities in these functions. If the muscles of the back weaken, spinal curvatures can develop.
The only treatment for this disease is injection
Zolgensma, which costs around ₹17.5 crore. The injection is neither manufactured in India nor available in India.
However, a person who requires Zolgensma drug in India for SMA treatment needs to order it from the US after taking government approval and the doctor's recommendation.
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