Racing against time, Mumbai couple appeals for urgent support

Nirvaan Menon is a 15.5 month old baby who has been diagnosed with a rare genetic disorder, Spinal Muscular Atrophy (SMA) – Type II. Due to this, the nerve cells that control voluntary muscles are impacted. In the following interview, his parents, Sarang Menon and Aditi Nair, share his story and urge people to join hands. Read on, edited excerpts from the interview.

Please tell us about yourselves: educational background and profession.  

Aditi: I completed schooling from Apeejay, Nerul in 2005. I studied there from Nursery to 12. Post that, I pursued Computer Engineering from the University of Mumbai till 2013. And, for the past six years, I have been working as a Database developer. Currently, I am associated with Capgemini.

Sarang: I completed schooling in Kerala. After which I pursued Mechanical Engineering from the prestigious Karunya Institute of Technology and Sciences in Coimbatore, Tamil Nadu till 2010. Then, I took up a course in Marine Engineering in Great Eastern Institute Of Maritime Studies, Lonavala. Currently, I am associated with Princess Cruises as a Second Engineer Officer.  

Did you identify Nirvaan’s condition at birth? What was your reaction?

Aditi:  We had Nirvaan in October, 2021. To diagnose SMA, a pre-natal detection was not possible in India. So, we were not aware about his condition. However, we underwent the range of tests necessary to know the health of the baby. It was when he was about 13 months old and began to miss developmental milestones, we identified the issue. Then, we consulted several orthopedics, neurologists, and pediatricians to understand his condition better. On Jan 07 this year, it was confirmed that he is suffering from SMA.

Sarang: Initially, we did not accept his condition.We felt that each baby is different and if he is not walking or standing properly, is not a big issue. However, his spine x-ray showed us a curvature due to which a doctor suggested surgery. But, he also advised that we must consult a neurologist to understand why Nirvaan wasn’t walking. After a nerve-based examination, the experts identified the chances of him having SMA. To our bad luck, the test came positive. Then, we met Dr. Neelu Desai at P.D. Hinduja National Hospital and Medical Research Centre in Mumbai who confirmed SMA Type II. Upon hearing the news, we were in shock. None of us, our family members or distant relatives, have a history of this condition.  

How have you undergone the treatment process thus far?

Sarang: We have been advised to administer the drug called Zolgensma by Novartis which has shown great promise in helping children with SMA. The only problem is that it is also the most expensive drug in the world, costing a staggering $2.1 million dollars or nearly Rupees 17.3 crores. At present, we have collected 1.9 crore which is only a small percentage of the amount we need.

Nirvaan needs the said medicine to be injected before he turns 2 years old. So, currently, we are racing against time. And to further this, we have started a crowd-funding activity. His condition is progressive and it begins to degenerate the muscles and nerves with time.

For new parents, what are the early signs to watch out for?

Sarang: In Nirvaan’s case, he showed problems with standing and walking. When these crucial milestones were not met by him, it became a cause for concern. At present, we take him for regular physiotherapy sessions to manage the degeneration. Along with that, the only drug available in India for SMA is Risdiplam which costs Rupees 6 lakhs per vial. And in the coming years, the need for it will only increase. He needs to sustain this drug throughout his life.

How is Nirvaan doing right now? What are the day-to-day complications?

Sarang: Currently, he is able to crawl. But he cannot stand or sit up on his own. Even if he tries, he can only sustain himself for a few seconds and then he falls. In an extreme case, he might even lose the ability to eat and breathe.

Is the condition completely curable? With his development, can the issues be mitigated? 

Sarang: I have been in touch with a few parents whose babies are also suffering from SMA. After injecting the Onasamnogone drug, their wards have shown drastic improvement. Most of these parents have also crowdfunded to be able to afford the said drug. There is another boy from Gujarat who shares the same signs as Nirvaan. He was provided with the drug on the 19^th month of his birth and he was able to stand soon. Why the said drug is a necessity for us, is because it has the ability to stop further worsening of his condition.

How much support has been received till now? Are you in touch with any non-governmental organisations or government bodies?

Aditi: We recently met the Health Minister of Kerala who informed us that the government provides Risdiplam for a certain duration for free. However, to sustain it for a lifetime, is still quite expensive. Therefore, we are looking for support from people for Onasamnogone which can provide Nirvaan with the missing gene.

Sarang: We have started crowdfunding through two platforms, i.e. Milaap and Impact Guru. And, have ensured to maintain transparency with the people who are donating for the cause. Further, we are trying to reach other foundations and hoping to hear from them soon.

Your message for people?

Aditi: We have a huge amount in front of us. However, we are hopeful. Even if 17 lakh people can donate a sum of Rupees 100, our goal will be met. Therefore, it is imperative that more and more people become aware about us and come forward.

To assist Aditi and Sarang, please donate.

For Donors outside India and USA (donation is possible in all currencies using credit/debit cards. And those who wish to do a bank transfer for large donations, following are the options):

1. Beneficiary Name / Milaap Social Ventures USA

Account Number / 9800991814
Type of Account / Checking
Beneficiary Address / 5335 Montrose Drive,
Dallas, TX 75209
Bank name / Evolve Bank & Trust
ABA Routing Number / 084106768
Bank Address / 6070 Poplar Ave, Suite 200
Memphis, TN 38119

Please send an email to [email protected] and [email protected] with the transfer details to receive acknowledgment. Acknowledgment will be issued within 1-2 working days.

2) For DAFs, Family Foundations and HNIs in the US

Donations above $1000 towards this initiative can be made through Milaap’s 501c3 partner in the US and will receive tax-exemption for US tax-residents.

Beneficiary Name/ ASSET India Foundation 

Account Number 9800962772
Type of Account/ Checking
Beneficiary Address/ Asset India Foundation, 1041 West Thorn Street San Diego, CA 92103
ABA Routing Number/ 084106768
Bank Name/ Evolve Bank & Trust
Bank Address/ 6070 Poplar Ave, Suite 200 Memphis, TN 38119

Please send an email to [email protected] and [email protected] with the transfer details to receive acknowledgment.  Acknowledgment will be issued within 1-2 working days.

In addition to this, visit ImpactGuru and Milaap websites for more details.