Sanjay Lama

“I never imagined that life would lead me down this path, one filled with both immense love and endless worry. My name is Sanjay Lama, and I live in a quiet village in Suryabinayak Municipality. I never knew what it meant to truly bear the weight of another life until my third child was born. Parenthood had already shown me its unpredictable nature when my first son was taken from me before he could even open his eyes to the world. Then, my daughter came, born through surgery, healthy and vibrant - a bright light in our lives. But it was my third child, my son, who taught me the profound meaning of unconditional love. 

He was born under difficult circumstances. The doctors said he was positioned the wrong way, upside down in the womb, so we had to bring him into the world through surgery. After a week in the hospital, we finally took him home, but it wasn’t long before trouble struck again - he developed severe jaundice. I remember the ICU at City Hospital, the cold, sterile air of that room as my tiny son lay fighting for his life, while my heart broke in silence. We spent another week there, and when the jaundice finally cleared, we thought the worst was behind us. 

But as the months passed, something wasn’t right. By the time my son was eight or nine months old, he wasn’t moving like other babies. Wherever we laid him down, he stayed still. There was no reaching out, no rolling over, no crawling. We told ourselves that maybe he was just a late bloomer, maybe he would catch up. But as the days went on, the worry gnawed at me. A father knows when something is wrong. 

Then came the seizures - the frightening jerks and stiffness that sent us running to hospitals again. The doctors diagnosed epilepsy and gave us medications that slowed the seizures, but they couldn’t give us the answers we desperately sought. I watched my son struggle in ways no child should, helpless as a parent, doing everything I could but never feeling like it was enough. 

When we finally went to Prayas Nepal, an organisation that helps children with special needs, they guided us to Dhapakhel’s Self-help Group for Cerebral Palsy (SGCP), where we learned the truth. Cerebral palsy. Those words landed with the force of a storm, shaking everything I thought I knew about parenthood, about life. I couldn’t believe this was happening to my son - my beautiful, innocent boy. 

The days that followed were a blur of worry and frustration, but in the midst of it all, we found a community. I joined a group set up by SGCP for parents like me, parents who know what it takes to care for children with special needs. Together, we created Shubha Bihani, a support system where we could share our struggles, lean on each other, and pool our resources for emergencies. I’m now the president of this group, and we’ve been fighting to get more support from the government. The monthly allowance they give is barely enough to cover basic needs, let alone healthcare or education. We’ve protested, spoken out, and done everything we can, but it feels like an uphill battle. 

Taking care of my son is more than a full-time job. Every day, my wife and I take turns feeding him, bathing him, and watching over him, making sure he’s as comfortable as possible. He’s three now, and while his progress is slow, it is there. He can crawl a little, roll over, and even take a few wobbly steps. Sometimes he watches videos on my phone, his eyes following the colors and sounds for a few precious minutes. It’s these moments that fill my heart with hope, that remind me why we keep fighting. 

Financially, it’s a struggle. I work as a Lama by profession, but to make ends meet, I also do deliveries for Pathao on my bike. The income is unpredictable - some days I make Rs.1,000 (roughly £6), other days Rs.1,200 (roughly £7) - but without it, we wouldn’t survive. We lease farmland from others, growing maize and vegetables, and we have a bull. It’s hard, gruelling work, but it helps keep food on the table. 

I’ve had to sell much of our land to pay for my son’s treatment, and we’re still deep in debt. Every rupee I have saved over the years is gone, spent on hospital bills that never seem to end. All we have left is this house, and even that is overshadowed by loans. Sometimes I wonder what the future holds for my children. For my son, it’s hard to see past the daily challenges. For my daughter, I worry whether we’ll be able to give her the opportunities she deserves. 

And yet, through it all, I find strength. My son, despite everything, has a spark of life in him that I can’t describe. He’s a fighter, and because of him, I have become a fighter too. I fight not just for him, but for every child with special needs in Nepal, and for every parent who wakes up every day wondering how they will get through the next hour, the next day, the next year. 

The government must do more. Our children need hospitals, schools, and places where they can be cared for, and where their futures can be secure. There are so many children like my son across the country, and yet there’s no record of them, no plan, no support. We need change, not just for our children but for us, the parents, the guardians. We are their lifelines, but who will look after them when we’re no longer here? 

Some days, the weight of it all feels too heavy. But then I look at my son, and I know I will carry it as long as I have to. Because that’s what it means to be a father, to love without limits, to care without condition, even when the future is uncertain.”