The greatest virtue of all is frequently thought to be kindness. The Mumbai-based couple who received an anonymous $1.4 million donation for the care of their only kid got to witness it firsthand.
Sarang Menon and Adithi had been frantically trying to raise money for the medical care of their son Nirvaan, who had Spinal Muscular Atrophy (SMA) Type 2, a rare genetic neuromuscular condition.
Last month, during a regular Electromyography (EMG) test, the doctors gave them a heartbreaking diagnosis.
SMA (SPINAL MUSCULAR ATROPHY)
A hereditary disorder that results in muscle loss and weakening is known as spinal muscular atrophy (SMA) (when muscles get smaller). Crawling, walking, sitting up, and head control in children can all be impacted by SMA. The muscles used for breathing and swallowing can be harmed by severe SMA. SMA comes in four varieties.
“Nirvaan was identified as having spinal muscular atrophy (SMA) Type 2 during the 14th month. Due to this life-altering condition, which substantially reduces lifespan and renders sufferers unable to walk, eat, or breathe, our world was upended and completely altered “The pair was told.
The issues were made worse when they learned that the medication needed for Nirvana’s therapy cost an outrageous $2.1 million for each dose.
According to the UK’s National Health Service, Novartis Gene Therapies’ Zolgensma is the medicine with the highest per-dose cost in the world (NHS). After the order is placed, it takes about 20 days to arrive in India.
ZOLGENSMA
According to an official statement from the UK’s National Health Service, the medication, named Zolgensma, is made by Novartis Gene Therapies and costs 18 crores (£1.79 million) for each dose (NHS).
Spinal muscular atrophy (SMA), an uncommon and frequently fatal hereditary illness, is treated by medication. According to the most recent research, Zolgensma may help young infants with type 1 SMA have a rapid and lasting improvement in their motor function.
Crestfallen To preserve their child’s life, the pair gathered their composure and turned to crowdsource. They began raising funds on two crowdfunding websites, Milaap and ImpactGuru, to raise $2.1 million (Rs 17.5 crore).
“There is still humanity… To have someone in another part of the world do this for our child. Sarang posted about their anonymous donor’s kindness on his Facebook page, Nirvaan Fights SMA, saying, “Whoever this person is, he or she is like God for us.
To personally thank the contributor, he immediately contacted Milaap. He was completely taken aback when he learned that the donor had specifically asked for complete anonymity.
I’ve checked the crowdfunding accounts every day since we first created them. We had gotten almost Rs 5.5 crore by February 19. I saw a sharp increase in the amount on February 20. I called the Milaap operators to see if it was a technical issue, but they confirmed that someone had indeed given that much. Sarang, a merchant navy officer, said, “We were overjoyed.
The couple is aware that the battle is far from over. But, the task at hand and the journey ahead have both become a little less complicated thanks to the anonymous donation.
The doctors at Mumbai’s Hinduja Hospital have started a conversation about bringing in drugs from the US.
The parents of little Nirvaan have contacted Nirmala Sitharaman, the union finance minister, to request an exemption from the customs charge and GST that are ordinarily imposed on medicine.
According to prior research, Zolgensma can help infants breathe without a ventilator, sit up by themselves, crawl, and walk after just one infusion.
