A Kerala village's massive drive to save a toddler's life

The family of Muhammed Ewaan, a two-year-old stricken with a rare genetic disorder, has one week to raise Rs 1 crore to pay for administering the treatment.
Muhammed Ewaan, the two-year-old who requires immediate treatment
Muhammed Ewaan, the two-year-old who requires immediate treatment
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Had the toddler Ewaan been any other child, he would have been running happily playing with other children. But his parents, anxious when he could barely walk even at 16 months of age, were devastated when they found out he was suffering from a rare genetic disorder Spinal Muscular Atrophy (SMA). Even before they could recover from the news, came the other shock. The most effective treatment for this disorder is gene therapy through a one-time infusion to the vein. And this costs a whopping Rs 18 crore. Out of this, Rs 9.5 crore has to be paid in a week’s time, while the family gets another two years to pay the rest of the amount. So far, they have been able to raise Rs 8.5 crore.

Having recently lost his job as a driver in Dubai, Ewaan’s father Kalullathil Noufal decided to turn to his village for help. What started was an unprecedented fundraising effort to save Ewaan, that erased social barriers and brought people together.

Kallullathil Noufal, who hails from Paleri village in Kozhikode district, returned to India in April 2021 from Dubai, after he lost his job following the COVID-19 pandemic. But soon, Noufal and his wife Jasmine found out that their son was suffering from SMA. “It is a neuromuscular disorder caused by a mutation in the human Survival Motor Neuron 1 (SMN 1) gene. It leads to muscle weakness and trouble with speaking, walking, swallowing, and breathing,” said Dr Ajil Abdulla, paediatrician and CEO, Vellnezmed Health Care. 

“The most effective treatment for SMA is gene therapy. The medicine onasemnogene abeparvovec sold under the brand name Zolgensma, has to be imported from the US and costs around USD 2.125 million (approx Rs 18 crore). It is used as a one-time infusion to the vein. It works by replacing the abnormal SMN1 gene with a normal SMN1 gene. For an effective treatment, it is to be administered before the child turns two years,” Dr Ajil added. Ewaan is a week away from turning two (August 22). Zolgensma was approved by the Food and Drug Administration (FDA) in 2019 to treat SMA in children less than two years old and is the most expensive medicine in the world.

When Noufal sought his village's help, they immediately formed a medical fund committee to identify potential sources and methods to raise the fund. So methodical was the process that they formed 15 sub-committees and identified several places where they could raise funds. Educational institutes, religious institutes, homes, shops, social media and so on. 

Gram sabhas were convened at many localities to propagate the message and collect funds from various homes and shops. By then, many youths, political party activists, philanthropists, charity workers, and religious leaders joined the initiative. People from the nearby towns including Kuttiady, Kadiyangad, Panthirikkara, Perambra, Nadapuram, and Meppayur, irrespective of caste, class, religious, gender barriers joined hands together and adopted various methods to raise funds to save the life of the toddler. So far, the Ewaan fund committee has managed to collect Rs 8.5 crore. The family is now racing to collect Rs 1 crore in the coming week, so he can be administered the medicine.

Massive fundraising effort

The collection of funds were on a massive scale never seen before. The committee members started off by assigning specific duties to their volunteers and before they knew it, the fundraising had spread far and wide, drawing people from every corner of the society. 

“We assigned specific duties to volunteers. The volunteers and committee members visited around 1,000 mosque committees in Kozhikode district and requested them to do a bucket collection after Friday sermons,” committee member Razak Paleri said. They also visited 76 Community Development Societies (CDS) of Kudumbashree in Kozhikode district and these volunteers ended up collecting over Rs 96.61 lakh. The next step was educational institutions. Volunteers visited at least 200 schools in Kozhikode district. “Many students donated their piggy banks and school savings bank collections. Some students donated their golden earrings, bangles, and rings. We have collected more than Rs 1 crore from schools so far,” Abdulla Salman ZA, schools fund coordinator said.

To attract public attention to Ewaan’s plight, a group of five young graduates went on a cycle marathon covering 510 km from Paleri to Thiruvananthapuram. Throughout their journey, they distributed pamphlets, advocated the campaign, shared Ewaan's bank account details, and convinced people to contribute. 

“We got a warm response from people. We were offered food and refreshment everywhere and even provided lodging for a cheap rate,” Shebin, a team member, said. Others went to public places like malls and bus stands and collected donations. Bus operators in the Kuttiady-Kozhikode route joined the initiative by donating a day’s income and worker’s salary to the Ewaan fund. Even the passengers donated to the treatment. In just one day, they had raised Rs 13 lakh. Around 300 volunteers selling cattle skins also donated Rs 5.44 lakh. 

Auto drivers not only donated a day’s income, but also sold biryani and payasam and then donated the proceeds to the fund. Similarly, mobile shopkeepers, hotel owners, barbershops, textile shop owners, and electronics shop owners donated their one day income to Ewaan fund.

Meals being prepared at Puravoor temple

The local temple and mosque came together in Kadiyangad and decided to put up a meal challenge. The Puravooridam Sri Paradevatha Bhagavathi temple committee in Kadiyangad prepared 1,000 packets of traditional sadhya meal, while the neighbouring mosque committee sponsored the cooking utensils and a light and sound rental store provided generators free of cost. This was sold to people at a rate of Rs 50 per meal.

“Both Hindus and Muslims cooperated with the initiative and bought meals from us. Youths, irrespective of religion, volunteered to deliver the food. Neighbouring houses donated the raw materials,” VP Sunil, the temple committee secretary, said. He added that the temple raised Rs 50,000 by selling the meal.

Political parties also rally together

Political parties and service groups also jumped in and encouraged their members to organise activities including selling biryani, payasam, karkidaka gruel and jackfruit chips. 

The Muslim youth league in Perambra constituency decided to collect coconuts as donation in Kuttiady and Perambra region, well known for coconut plantation. These coconuts will later be sold in the market at Rs 10. 

Another place where they tried to raise funds was the panam payatt or sahaaya kuri, a traditional crowdfunding method. This is a unique custom in the northern Kerala region, conducted to collect money for marrying off daughters, construction of houses, or meeting urgent financial requirements. The participants are usually treated with food or snacks during the event. This unique event got a makeover in Thottilpalam town as the organisers treated the participants with songs instead of food and later collected funds at the event. “We collected Rs 1.58 lakh that day. We received donations ranging from Rs 10 to Rs 2,000. Many people participated in the people’s panam payatt, as a few days ago we distributed an invitation letter to almost all houses in the area,” Aneesh Thottilpalam, Nizhal charitable trust chairman said. 

Even the recycling industry pitched in

A group of youth in Muthuvannacha town, who work in the scrap industry, collected old scrap items, including metals, rusted iron bars, and worn-out machinery, from houses and shops and sold them to the scrap market. Many other groups collected old newspapers and books and sold them to the market. People of Paleri and neighbouring areas conducted auctions of various commodities including domestic animals and bunches of bananas. In many marriage functions and housewarming functions, a donation box for the Ewaan fund and QR codes of the Gpay account were placed. 

Muhammad Ewaan

It was not just Keralites who were drawn in to collect funds. On July 8, on the eve of Eid, three barbershops, operated by migrant labourers from Uttar Pradesh, pasted a notice announcing that all proceedings of that day will be contributed to Ewaan. “10 days before Eid, Ewaan came with his uncle to my shop for hairdressing. I felt good talking to Ewaan. The boy’s innocent smile was such a nice treat to watch. Later, I discussed Ewaan's crisis with my cousins and friends working in barbershops in the Kuttiady area and convinced them to donate a day’s income to the toddler,” said 24-year-old Nadeem Ahamed, who runs Beckam hair salon at Cheriyakumbalam said. They fixed July 8 for the ‘hair cutting challenge’ and collected Rs 17,300.

“Be it north Indian or south Indian, all of us need to contribute in whatever way to save the toddler’s life. We are planning to meet all those migrant labourers working in hair salons and convince them to contribute in whatever way they can,” Nadeem added, recalling Ewaan’s sweet smile when he handed over him a box of chocolates at his residence in Paleri.

If you would like to donate to the treatment of Muhammed Ewaan, you can send your contribution to the account. 



AC NO: 20470200002625

IFS Code: FDRL0002047


GPAY NUMBER:7034375534

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