I still remember the first time I held her in my arms. She was so tiny, so perfect. My heart brimmed with dreams for her, dreams of laughter, school days, and little mischiefs. But all of that came crashing down when she was just three months old. What started as a swelling in her tiny wrist grew so rapidly that it engulfed her entire arm within weeks.

Doctor after doctor offered reassurances—just a pulled nerve, perhaps a minor fracture. The swelling worsened, and my sweet child’s once-active arm lay limp at her side. That was only the beginning of a journey that would lead us to a devastating diagnosis and a life we never imagined for her. Or for us.

Rewa, Indore, Nagpur, Mumbai. Everywhere we went, we hoped for answers, only to return with more questions. The most difficult moment came when she was just five months old, and doctors told us they needed to operate on her shoulder to remove pus from her joint. She was so small, and the thought of putting her under anesthesia broke me, but we had no choice. Even after spending over ₹1 lakh, there was no improvement. By the time she turned nine months old, her knees began swelling too, and she couldn’t even lift herself.

When we finally reached Mumbai, doctors ran genetic tests and confirmed the unimaginable. Mevalonate Kinase Deficiency (MKD), they said. This condition is so rare that it affects only one in one lakh children. They explained how our genes had caused this, though we had no signs of it ourselves. Treatment options were limited, and after years of tests and medicines, we were told the only way to save her was a bone marrow transplant (BMT). The cost? More than thirty lakhs. The weight of those words crushed me like a mountain. How could we ever afford that when even basic hospital visits left us borrowing from relatives?

The cold worsens her pain and swells her joints until she can’t even walk. At night, she clings to me, sobbing in pain, unable to sleep without paracetamol. During the day, she drags herself across the floor because her legs won’t hold her. Every little thing—drinking water, playing with her toys—depends on me. She calls out, “Ma, when will you take me outside?” but I can’t. She’s too fragile. A small fall could cause more swelling, more pain.

She remembers every lesson I teach her. If she were healthy, she’d be in school, laughing, learning, and playing like other kids. But instead, she lies on my lap, watching the world from the sidelines. We’ve already spent ₹5 lakhs on her treatment, relying on loans and help from relatives. But there’s nothing left now. My husband works as a nursing staff member, earning just ₹7000 a month. Every rupee goes toward her medicines, doctor visits, and managing our home. There’s no way we can raise the amount we need on our own.