In a heartwarming gesture, a mystery donor has donated a whopping Rs 11 crore to fund the treatment of a 15-month-old boy from Kerala suffering from a rare medical condition.
15-month old Nirvaan was born with an extremely rare genetic disorder- Spinal Muscular Atrophy (SMA) which makes the infant’s body weak and unable to move limbs.
FACEBOOK/NirvaanFightsSMA
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.
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World’s most expensive medicine
There is only one medicine available for the treatment of SMA and it has to be administered before the patient turns two years old.
But the one-time gene therapy developed by Novartis, Zolgensma costs as much as Rs 17 crores, including taxes, making it one of the world’s most expensive drugs and nearly impossible for most parents to afford the treatment.
Crowdfunding to raise money for treatment
Nirvaan was diagnosed with SMA Type-2 in January and his parents, Sarang and Adithi, launched a crowdfunding campaign to raise funds to import the medicine from the US.
Until February 19, they had raised around Rs 5.42 crore to treat Nirvaan.
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FACEBOOK/NirvaanFightsSMA
But on Monday, to their pleasant surprise, a huge sum was donated.
Anonymous donor gives Rs 11 crore
A donation of $1.4 million (around Rs 11 crore) was donated through one of the crowdfunding platforms, bringing the family close to their goal.
According to Nirvaan’s parents, they contacted the crowdfunding platform to get the details of the donner but were told that the person wanted to remain anonymous.
FACEBOOK/NirvaanFightsSMA
‘There are still angels’
“We want to share a piece of good news with you all-we have received a significant donation of $1.4 million from an anonymous donor. Their generosity has brought us closer to our goal of raising the funds needed for Nirvaan’s treatment. It is heartwarming to know that there are still angels in the world who selflessly come forward to help others in need. I urge you all to continue praying for Nirvaan’s fast recovery, as he still has a long road ahead. But for now, let’s take a moment to celebrate this wonderful news and the kindness of the donor who has made it possible,” the family said in a Facebook post.
FACEBOOK/NirvaanFightsSMA
The family also said that so far, more than 72,000 people have contributed to their son’s treatment.
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