Kerala: Muhammed Ewaan Needs Expensive Gene Therapy for Spinal Muscular Atrophy Condition

 - Sakshi Post

Kozhikode : Muhammed Ewaan is a two-year-old boy stricken with a rare genetic disorder. He is 16 months old and yet barely walks because he is suffering from a rare genetic disorder Spinal Muscular Atrophy (SMA) which doesn’t allow him to walk like a normal boy at the normal age. According to the doctors, SMA has only one viable option — gene therapy which costs a whopping Rs 18 crore. 

Ewaan’s father Kallullathil Noufal is a native of Paleri village in Kozhikode. He was working as a driver in Dubai. After losing his job due to Covid-19 pandemic, he returned to India in April 2021. Soon, Noufal and his wife Jasmine found out 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 children’s doctor said the most effective treatment for SMA is gene therapy. 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.

“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),” Abdulla added. 

Then Noufal turned to his fellow residents of the village. What started as a small donation drive soon turned into an unprecedented crowdfunding effort. The villagers formed a medical fund committee to identify potential sources and methods to raise the fund. Later, 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. 

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Soon, Gram Sabhas, many youths, political party activists, philanthropists, charity workers, and religious leaders joined the initiative. Ignoring the caste, creed, religious or political barrier, people started taking part in the mass fundraising exercise. Community kitchens were set up to sell food for fundraising. Devotees from mosques and temples also collected funds for Ewaan’s medical treatment. 

With people’s help and unprecedented efforts, 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 following the payment of the first installment of this costly procedure. 

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