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About Baby Nivansh

Nivansh, at just 11 months old, is courageously battling Type-2 SMA (Spinal Muscular Atrophy), a life-threatening genetic disorder that poses challenges to his breathing and movement. He faces respiratory difficulties, relying on the essential support of a BiPAP machine and nebulization. Key aspects of his health situation

  • Everyday, Nivansh needs BiPAP, physiotherapy, medications, and nebulization to strive through the day.

  • But, a gene therapy called Zolgensma could provide him a chance at a brighter, healthier future, and free him from the shadows of SMA. 

  • The challenge is the cost of ZOLGENSMA gene therapy, which is ₹16 crore, and is beyond the reach of a middle-class family

  • Also, time is of the essence with a progressive condition like Nivansh's, so the gene therapy must be given to Nivansh before he turns 2.

  • Hence, his parents Venkateswara and Usha Rani are seeking financial support to save their son's life.

1-year-old child Nivansh

Baby Nivansh's SMA Diagnosis History

Nivansh Milestones

Baby Nivansh's SMA Type 2 Journey

Baby Nivansh journey -  From witnessing joy that once filled his days, to the life-threatening impact of SMA Type 2, causing profound challenges.

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What is SMA
(Spinal Muscular Atrophy)

  • Type-2 SMA (Spinal Muscular Atrophy) is a disorder affecting the motor neurons—nerve cells that control voluntary muscle movement These cells are located in the spinal cord.

  • Because the muscles cannot respond to signals from the nerves, they atrophy — weaken and shrink — from inactivity.
     

  • One in every 6,000 babies is born with Type-2 SMA (Spinal Muscular Atrophy). It is one of the most prevalent genetic disorders affecting young children and a major cause of death in infancy.

  • Type-2 SMA (Spinal Muscular Atrophy) can strike children at any age. SMA in infancy and early childhood is associated with worse outcomes, while patients who develop symptoms later in childhood or in adolescence usually have a more positive prognosis.

  • Type-2 SMA (Spinal Muscular Atrophy) does not affect sensory nerves or intellect, but it has been observed that many patients with SMA are highly intelligent.

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Reference: What is SMA | zolgensma (https://www.zolgensma.com/about-sma)

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