Maybe we were never prepared to accept a truth so heavy. In all the dreams we had for our son, there was never a place for hospitals, medicines, or a genetic disorder. We pictured birthdays, school days, and tiny footsteps running across the house, not doctors’ appointments and life-altering diagnoses.

And yet, one word changed everything — SMA (Spinal Muscular Atrophy).

My name is Moktarul Islam. I am the father of my 2-year-old son, Saheed. While other children his age were learning to sit, crawl, and explore the world with laughter, my little boy struggled to even sit up straight. We kept telling ourselves he would catch up soon. Maybe he was just a little slower. Maybe we were worrying too much.

But deep down, we knew something wasn’t right.

When we consulted a doctor at Bangalore Baptist Hospital, our world changed in a matter of moments. That was the day we first heard a term we had never known before — SMA (Spinal Muscular Atrophy). And from that moment on, our lives were divided into two parts: before that diagnosis… and after.

What is SMA, a rare genetic disorder?

Spinal Muscular Atrophy (SMA) is a rare, inherited genetic condition that progressively destroys nerve cells in the brain and spinal cord, leading to muscle weakness and atrophy (wasting). It is caused by a defect in the SMN1 gene, which is responsible for producing the Survival Motor Neuron (SMN) protein, essential for the health of motor neurons. SMA affects critical functions such as breathing, swallowing, and movement.

Saheed is currently on Risdiplam (marketed as Evrysdi) and undergoing regular physiotherapy at home. He often suffers from frequent fever, colds, and extreme weakness. Every small infection becomes a big worry for us because his fragile body struggles to cope.

Note: Risdiplam is an oral medication used to treat SMA. It works by modifying the splicing of the SMN2 gene to increase the production of functional SMN protein — the very protein that children with Spinal Muscular Atrophy (SMA) lack, and which is crucial for motor neuron survival. While this medicine helps slow the progression of the condition, it is not a permanent cure.

Saheed urgently needs a one-time, life-saving gene therapy called Zolgensma, approved by the US FDA. This revolutionary treatment replaces the faulty gene responsible for SMA and gives children a chance at a normal, healthier life.

However, the cost of this therapy is an overwhelming INR 9 crore. Though extremely expensive, Zolgensma is not just a treatment for Saheed; it is his only real hope for complete recovery and a future where he can sit, stand, and live like other children his age.

Here’s how you can help Saheed

• Visit his fundraiser page on ImpactGuru and make a donation.
• Share his story with your friends, family, and on social media to help get more support.

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সাহেদকে আপনি কীভাবে সাহায্য করতে পারেন তা এখানে দেওয়া হলইমপ্যাক্টগুরুতে তার তহবিল সংগ্রহের পৃষ্ঠাটি দেখুন এবং অনুদান দিন।

আরও সহায়তা পেতে আপনার বন্ধুদের, পরিবার এবং সোশ্যাল মিডিয়ায় তার গল্পটি শেয়ার করুন।