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United Fight Against SMA: 18 Crores Raised To Treat A Rare Genetic Disorder

Mohammad, son of Rafeeq and Mariam from Kannur district in Kerala, has been diagnosed with Spinal Muscular Atrophy. A similar condition that his 15-year-old sister Afra is suffering. As a consequence of late diagnosis and treatment, she is paralyzed below the waist and can therefore move around only in a wheelchair.  

Spinal Muscular Atrophy(SMA)

It is a genetic disease that affects the central nervous system, peripheral nervous system and voluntary muscle movement. Nerve cells controlling the muscles are located in the spinal cord. But SMA affects the muscles which do not receive signals from nerve cells.

Atrophy refers to ‘getting smaller’ which usually occurs when the muscles are not stimulated by nerve cells.           

What Causes SMA?

Deficiency of a motor neuron protein called “survival of motor neuron” (SMN) in chromosome 5 results in SMA. The protein is necessary for normal motor neuron function. SMN plays a pivotal role in the expression of the genes of motor neurons.

Symptoms of SMA

  1. Includes weakness of the voluntary muscles near the shoulders, hips, thighs, and upper back.
  • Lower limbs are more affected compared to the upper limbs.
  • Deep tendon reflexes are decreased.
  • Chances of spinal curvature.
  • If the muscles for swallowing and breathing are affected, chances of other complications.

Zolgensma

A single dose of the medicine to treat the disorder costs around 18 crores. One of the most expensive medicines in the world had to be imported from the US for treatment. According to the hospital, if he is administered and treated with the medicine before the age of two, he can be helped.        

Crowdfunding

A treatment committee led by MLA Vijin and a video posted by Afra seeking help from the public to raise the amount for the treatment proved to be successful. Contributions came in from all around the world and within the initial few days they were able to raise around Rs. 4 crores. And within the next few days the entire amount had reached their account.

People all over the world were like the Good Samaritan in Mohammad’s life.

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