Two boys’ battle with spinal muscular atrophy, and a world of difference

February 20, 2023, must have been the most memorable day for Sarang and Athidhi Nair the parents of 15-month-old Nirvan, who was born with the rare genetic condition, spinal muscular atrophy. The Menons had been running a crowdfunding campaign on MILAAP for his treatment when a contribution of $1.4 million (Rs 11 crore) by a stranger offered a new lease of life for Nirvan.

The crowdfunding platform MILAAP has informed them that the contributor wishes to remain anonymous and that they cannot even disclose the country of remittance.

“We were not expecting this kind of development. We had set a timeframe of six months when we started the crowdfunding, but thanks to the anonymous donor, we could initiate the proceedings for the procurement of the drug. It could take two to three weeks, Sarang told The Federal.

Power of crowdfunding

Nirvan was born with a birth defect called congenital scoliosis, which is a spinal deformity in which babies are born with a sideways curvature of the spine. In the 14th month, he underwent electromyography (EMG), a diagnostic procedure to assess the health of the muscles and the nerve cells that control them (motor neurons). And that is when he got diagnosed with the rare genetic disorder, spinal muscular atrophy (SMA) type 2, which is progressive and worsens over time.

But the most effective treatment for this condition, a new drug called Zolgensma by Novartis, which has shown great promise in helping children with SMA, is also the most expensive drug in the world, costing a staggering $2.1 million dollars, or nearly ₹17.3 crore. That is when the couple started crowdfunding with the help of the US-based platform, MILAAP, to save their son.

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“Now we think congenital scoliosis was a blessing in disguise, as we were fortunate to diagnose the SMA in Nirvan at a very early stage,” says Sarang.

The other boy

Cut to Kochi’s Lake Shore Hospital, where three-year-old Hashim Yassin receives free care for the same condition as Nirvan, but he does not seem to share the latter’s luck. Hashim is from a Yemeni family that fled the country due to the war and sought refuge in Kozhancherry, Kerala, at the home of a friend, Sreeja Ullas. Their case is remarkable given the fact that they came to India because Yemen’s healthcare system has become totally dysfunctional.

Sreeja and her husband Ullas worked in the Al Wadi Ahamed Hospital in Sanaa from 2008 to 2015. That is where they met Yassin Ahamed Ali and Tunis Abdulla. Sreeja and Ullas left Yemen with their children as part of the India government’s evacuation mission when the war broke out in Yemen in 2015.

“After returning to Kerala, we started a supermarket in Kozhenchery but we kept in touch with Yassin and Tunis on social media,” said Sreeja. “Last October, I got a call from Yassin, who said they were in Maharashtra and the kid had been diagnosed with SMA in two hospitals in Mumbai and Pune. They had run out of all the money they had and were trying to get some kind of treatment for the boy. I asked them to come over,” she narrated.

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“The boy was not able to sit up on his own, and we consulted some doctors back in Yemen. With almost all hospitals with advanced treatment facilities shut down in our country, we were asked to take him to Jordan or India, and that’s how we ended up here,” said Yassin in his broken English.

Different treatment

With the help of some friends, Sreeja and her husband managed to find free treatment for the boy at the Lakeshore Hospital, Kochi.

“The primary diagnosis was made when the boy was 18 months old, and now he is unable to stand on his own, let alone walk. He has problems with food intake also. In general, it’s a progressive condition involving muscle degeneration. But when we give survival motor neuron protein, the degeneration will slow down and the condition will improve,” said Dr Bindu Varghese, the neurologist who treats Hashim.

“The injection Zolgensma, which has been reportedly prescribed for Nirvan, is part of a genetic treatment that is effective for kids below two years. That treatment regime is not advisable for our boy, who is past three,” clarified the doctor.

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Matter of lakhs

According to the current treatment regime, Hashim needs 22 bottles of Evrysdi (risdiplam), of which they have managed to procure six. According to the family, each bottle costs almost Rs 6 lakh.

Sreeja, along with this Yemeni family, has been knocking on the doors of people’s representatives and various organisations since November 2022 to get help for the boy’s treatment. Sreeja had taken up the matter with Kerala Health Minister Veena George, Union minister V Muraleedharan, former Opposition leader Ramesh Chennithala, and Pathanamthitta district collector Divya S Iyer. According to Sreeja, Iyer wrote to Chief Minister Pinarayi Vijayan, outlining the Yemeni family’s plight.

“Since they are not Indian citizens, the government might not be able to formally help them. So, we contacted many charity organisations and individuals, including (politicians) Panakkad Sadiq Ali Shihab Thangal and Munavvar Ali Shihab Thangal. Maybe because of that we could raise around Rs 8 lakh through crowdfunding, but it is not enough,” said Sreeja. “Maybe because of the notion that every Arabs are rich, people are not coming forward to help this boy,” added Sreeja.

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The clock is ticking

The boy needs to have the treatment completed in the next four or five months. “My kid is showing improvement after starting the medicine, but we do not know how to raise the rest of the amount. At home, we have nothing left. Our relatives are living a terrible life in a war-torn region. They do not even have enough to eat, let alone medical facilities,” said Yassin.

Before the war, Yassin worked as a pharmacist and Tunis as a nurse. They led a well-off life. When their boy fell ill, Tunis had to quit her job. After the war broke out, Yassin took up the job of a social worker with an NGO in Mukalla, Yemen.

Now that Nirvan has received support from an anonymous donor, Tunis and Yassin, as well as Sreeja and her family, hope that this child will also receive some kind of assistance.