My 13-Year-Old Is Bedridden. Now My 1-Year-Old Has the Same Rare Disease — Lesch–Nyhan Syndrome (LNS)
Hello IncredibleIndia Reddit,
My name is Pinky, and I am the mother of two boys, Subhajit (13) and Sudarshan (1).
Both of my children have been diagnosed with Lesch–Nyhan Syndrome (LNS), a rare genetic neurological and metabolic disorder that requires lifelong medical and supportive care.
ImpactGuru:
https://www.impactguru.com/fundraiser/help-subhajit-and-sudarshan
For those working at multinational companies, our fundraiser is also available through Benevity:
https://causes.benevity.org/projects/704607
Both children are currently receiving treatment at Apollo Multispeciality Hospital, Kolkata.
Dr. Anjan Bhattacharya, Apollo Multispeciality Hospital, Kolkata, has also shared information about our children's condition:
Doctor's LinkedIn post:
https://www.linkedin.com/posts/anjan-bhattacharya-95aa3763_healthcaresupport-raredisease-crowdfundingindia-share-7448771314837901312-W2vS
Video explaining our children's condition:
https://youtu.be/8e3zEgQ2HRo
💔 Our Story
My elder son, Subhajit, is completely dependent on caregivers. He lives with severe muscle stiffness, involuntary movements and serious neurological complications. He requires continuous medical supervision, therapy and supportive care.
When our second child was born, we did not have the confirmed genetic information and understanding that we have today. Looking back with hindsight, we wish we had known more earlier.
Our younger son, Sudarshan, is now one year old and has also been diagnosed with LNS. He has begun showing concerning symptoms and requires continuous monitoring, treatment and supportive care.
Watching one child go through this was heartbreaking. Facing the same diagnosis with our baby has been devastating for our family.
📊 Fundraiser Status
Goal: ₹2,67,70,000
Raised so far: ₹6,73,131
Still needed: ₹2,60,96,869
Total donors: 491
🩺 Medical Verification & Transparency
We understand that people may have questions before donating. We are completely open to verification.
Medical documents and reports:
https://drive.google.com/drive/folders/1dt0TbvX-eAIvsJSbpHnTVe5WJL_amg12?usp=drive_link
Our appeal video with an Apollo Hospital doctor:
https://youtu.be/WhiP-QGHMTI
I am also willing to participate in a live video call for verification if required.
👨👩👦 Our Family
My husband works as a Zomato delivery partner, while I am a full-time caregiver for our children.
We have exhausted our savings and taken loans while trying to manage their medical needs.
Both children require ongoing care, including:
- Regular blood investigations
- Neurological monitoring
- Physiotherapy
- Medicines and specialist consultations
- Nutrition and supportive care
- Equipment and other long-term medical needs
The financial burden is far beyond what our family can manage alone.
🙏 How You Can Help
If you are able to contribute, even a small donation can help us manage our children's ongoing care.
If you cannot donate, sharing this post is also a huge help. Every share gives our story a chance to reach someone who may be able to support our children.
We know that LNS currently has no cure. We are not raising money expecting a cure—we are trying to provide our children with the ongoing treatment, care, comfort and support they need throughout their lives.
Thank you for taking the time to read our story.
Your kindness, prayers, support and even a simple share mean more to our family than I can express. 🙏❤️
— Pinky
Mother of Subhajit and Sudarshan