Mumbai (Maharashtra) [India], February 20: When a child is born, it is an occasion of happiness for everyone around. Sadly for the Mumbai-based Menon family, the joy lasted only for moments until they realised their beloved son Nirvaan was born with a birth defect- Congenital Scoliosis. Later during tests, he was diagnosed with a rare genetic disorder- Spinal Muscular Atrophy (SMA) – Type 2. This deadly disease has taken away his ability to eat, walk or breathe. The family has joined hands with the crowdfunding platform ImpactGuru.com and is raising INR 17.5 crores for their son’s treatment.
Nirvaan suffers from Spinal Muscular Atrophy (SMA) Type-2, and his condition is progressive, which means that with each passing day, his condition worsens. To help him battle this disorder, the gene therapy that shows hope is Zolgensma. To avail of this therapy, the child should be within the age limit of 2 years. Hence, it is necessary to fight against the clock and save Nirvaan’s life.
“Spinal Muscular Atrophy, a disease we had never heard of, has held our child under its clutches. We are more than willing to take all steps and knock at all doors that can help our Nirvaan. Because INR 17+ crores is a huge amount for any middle-class family to afford, we cannot lose our beloved child. Every contribution made will help us give Nirvaan his childhood back,” said Sarang, Nirvaan’s father.
What is SMA-2?
Spinal Muscular Atrophy – Type 2 or SMA-2 is a genetic neuromuscular disorder that affects the nerve cells that control voluntary muscles (motor neurons). If not treated, the progressive muscles become weak and eventually restrict any muscular movement. Babies with SMA-2 can sit without support. However, they cannot walk or stand unassisted.
The raised amount on Impact Guru, an online medical fundraising platform, will be used for Nirvaan’s ongoing treatment and dose of Zolgensma Therapy.
The single highest donation received on the crowdfunding campaign in INR is approximately 1 crore. All details are mentioned in the fundraiser link: (https://www.impactguru.com/fundraiser/help-nirvaan-a-menon)
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The post A birth defect in his spine and now a rare disease! 15-month old Nirvaan needs INR 17.5 cr to battle SMA appeared first on Republic News Today.