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I dreamed of watching my son run. I never imagined I would spend my days watching him watch others.
Like every mother, I carried a simple dream when my son was born: a happy child, a sweet childhood, a life full of laughter and scraped knees and muddy shoes. I held Nivan in my arms and I thought, this is everything. This is enough.
But when Nivan was just 8 months old, something shifted in me, that quiet, cold feeling a mother gets when she knows, deep in her bones, that something is not right. He struggled to hold his head up. His little arms and legs moved less than they should. We rushed him to Hinduja Hospital. Test after test. Waiting room after waiting room. I remember sitting there, holding my husband's hand so tightly I think I forgot to breathe. The doctors told us Nivan had SMA Type 2 - Spinal Muscular Atrophy. The nerves that send signals to his muscles are slowly getting destroyed.
His body, which I grew inside mine, which I thought I had protected with everything I had was quietly, cruelly, turning against him. Eating, breathing, swallowing things I have never once thought about are things my son has to fight for every single day. There are no words for what that kind of news does to a mother. Nivan is 5 years old now. Some days, I find him sitting by the window, watching the children outside play cricket. He waves his tiny hands and kicks his little feet in the air, you can see the excitement in his eyes, the way they follow every throw, every run, every shout of joy. And I stand behind him, watching him watch them, and I press my lips together so he cannot hear me cry. Because he is in there, my boy, full of life and wonder, trapped in a body that will not keep up with his spirit. The doctors have told us he needs Risdiplam, that could stop this disease from taking more of him.
But Risdiplam costs more than we can afford. I cannot even say that number without my voice breaking. But I have not stopped. I will not stop. Because every morning, Nivan looks up at me with those eyes, and I see a boy who still believes his mother can fix anything.
So here I am, asking you, as a mother who is out of options but not out of hope, please help me save my son. Help me give Nivan the chance to one day run toward that cricket ball, instead of just watching it from behind the glass.
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Rahul Joshi
mumbai MAHARASHTRA
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Nivan Rahul Joshi
Child
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