On a Monday, beneath a clear blue sky, Mawii heard the most magical sound she had ever experienced: the first cry of her son, Aryan Lalruatfela Murthy, born on February 17, 2022. There were a lot of bad things happening around the world that Monday morning: the pandemic was still taking lives, and Russia-Ukraine tensions were high. But none of this mattered as Mawii and her husband, Nirnay Murthy, looked at their doe-eyed baby. Nothing would ever prepare them for what they were about to hear just twenty-four months later, their son would be the first half-Mizo child to be diagnosed with Spinal Muscular Atrophy, a rare genetic disease that affects 1 in 10,000 live-born babies.
Lalrinmawii Hmar, a resident of Saron Veng in Aizawl and her husband Nirnay Murthy of Yelahanka, Bangalore, are veterinarians. They met at Karnataka Veterinary, Animal, and Fisheries Sciences University in Bidar. They got married in December 2018.
The couple stayed at RT Nagar in Bangalore, a quaint residential area and they both started practising. To their utter joy, they came to know that they were expecting in early 2020, however, Mawii miscarried. And then, in 2021, amid all the chaos of the pandemic, they came to know that little Aryan had started making Mawii’s womb his first home.
Around June, Mawii, who got infected with the COVID-19 virus, had to stop going to work, and on February 17, 2022, Aryan was born. He was the perfect baby, with round eyes and silky buttery skin.
Till Aryan was seven months old, Mawii and Nirnay had new milestones to celebrate every month. They recorded his first smile, he started blabbering beautiful nonsensical words and would look at the world with wonder every day. When he was around seven months old, they found that he could not sit up straight for long, and he did not crawl at all. However, they assumed it was all delayed milestones. But, when his milestones were still not progressing at ten months, they went to their paediatrician.
And there the nightmare began. They travelled from one hospital to another, one clinic to another under the sweltering Bangalore heat, often getting stuck for hours in the traffic. Some doctors said Aryan’s parents had to go for counselling as they were overly concerned, some said he had muscle hypotonia, while some said he lacked vitamin D3. Some doctors even said he had container baby syndrome because he was carried often in a baby sling and suggested floor therapy while another doctor suggested speech therapy and physiotherapy. The couple tried everything.
Every time they put him on the floor, he would cry uncontrollably, “Hearing him cry and in pain was so difficult for both of us, they would put us in a different room,” said Mawii. When 2024 came around, Aryan was one year and eleven months old, he not only had little developmental progress, but he even lost some of the progress he had made.
In March 2024, when Aryan was almost 25 months old, Nirnay and Mawii were worried. They took him to see the doctor again, and this time, the doctor suggested a test for Spinal Muscular Atrophy. And to their horror, Aryan tested positive. SMA is a debilitating disease that weakens the nerves and muscles and eventually proves fatal.
“The day we heard the results, our entire life turned upside down. To make matters worse, if he was diagnosed before he turned twenty-four months old, there was a chance he could be included in a Global Managed Access Programme (gMAP) where a lottery system could get him the chance at free treatment,” said Mawii.
Aryan needs a gene therapy Injection Zolgensma (AVXS-101) which offers hope for SMA patients by replacing the missing or defective SMN1 gene, vital for motor neuron function.
However, the cost of Zolgensma is exorbitant, amounting to Rs 16 crore, a price that Mawii and Nirnay could not earn even in their whole lifetime, to make it worse, the treatment is time-sensitive and must be injected at an early stage to be effective.
“Our family is in turmoil. My father-in-law is no more, so my mother-in-law, a widow sold her assets and we could finance his medication for three months. Now we have nothing left and we know the amount that is to be raised is a lot, some people might think we might never reach our goal, but if we give up, the world is going to be so dark for our Aryan. Some people said have another child soon, ‘you are never going to be able to pay for his treatment’ but he is our everything,” said Aryan’s mother. From April 1, Aryans’ parents started reaching out to family and friends for financial aid and started crowdfunding.
Zolgensma gene therapy is one of the most expensive drugs in the world. According to a BBC report, while there is no official data on the number of Indians with the disease, existing literature shows that Spinal Muscular Atrophy affects nearly 1 in 10,000 live-born babies and one in 38 Indians are carriers of the faulty gene that causes SMA, compared with 1 in 50 people in the West.
According to the BBC report, there is potential to lower the cost of Risdiplam, a medication for SMA, in India. Advocacy groups have urged the government to negotiate with the manufacturer and called for a removal of the 12% goods and services tax on the drug. They have reached out to the federal health ministry, finance ministry, and leading government doctors to address these concerns.
Aryan is not only the first half-Mizo child diagnosed with SMA, but he is also the only one of two cases known in the Northeast. The other child, from Assam, is below twenty-four months old and has a chance at free treatment.
Last year in September, the father of Kanav Jangra from Delhi, who was diagnosed with SMA, started a crowdfunding campaign. His campaign went viral, with celebrities and famous persons appealing for funds. They raised 10.5 crore, and the US drug manufacturer agreed to sell it for the amount they raised.
The UK has made Spinal Muscular Atrophy medicines available through the National Health Service, while Australia provides eligible patients with subsidised access to expensive life-saving drugs. However, in India, patients frequently resort to crowdfunding to afford these treatments. Despite attempts to pressure the federal government into reducing the cost of these drugs, there has been no success. A diagnosis such as SMA, in India, has become a nightmare for parents who have to run around to every possible financial donor and live with the fear that their attempts may not be able to save their child’s life.
“Aryan is a happy child, but I am close to tears every time I hear him laughing. When we go to church, he used to plead with us so he can play with his peers, he calls them Au Au(a Mizo term used to call elder siblings) but he can only sit and watch them while we hold him,” said Mawii.
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