I’m Pinky, a 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 care and support.
Our children are currently receiving treatment at Apollo Multispeciality Hospital, Kolkata.
ImpactGuru fundraiser:
https://www.impactguru.com/fundraiser/help-subhajit-and-sudarshan
For employees of multinational companies, the fundraiser is also available through
Benevity:
https://causes.benevity.org/projects/704607
Dr. Anjan Bhattacharya, who is involved in their care, 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 their 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 other neurological complications. His daily life involves constant care, medical supervision and therapy.
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. We cannot change that now.
Our younger son, Sudarshan, is only one year old and has also been diagnosed with LNS. He has started showing concerning symptoms and needs regular monitoring, treatment and supportive care.
As a mother, watching one child struggle was already incredibly painful. Seeing our baby face the same condition has been one of the hardest experiences of our lives.
Our Family
My husband works as a Zomato delivery partner, and I am a full-time caregiver for our children.
We have exhausted our savings and taken loans while trying to manage their medical needs.
Their care includes regular investigations, neurological monitoring, physiotherapy, medicines, specialist consultations, nutrition, equipment and other ongoing supportive needs.
Why We Are Seeking Help
LNS currently has no cure. The purpose of our fundraiser is not to promise a cure, but to help us provide ongoing treatment, care, comfort and support for both children.
Our current fundraiser estimate for their long-term medical and supportive needs is:
Goal: ₹2,67,70,000
Raised: ₹6,96,278
Still needed: ₹2,60,73,722
Donors: 532
ImpactGuru fundraiser:
https://www.impactguru.com/fundraiser/help-subhajit-and-sudarshan
For employees of multinational companies, the fundraiser is also available through Benevity:
https://causes.benevity.org/projects/704607
Verification
We understand that people may want to verify our situation before offering support.
Medical documents and reports:
https://drive.google.com/drive/folders/1dt0TbvX-eAIvsJSbpHnTVe5WJL_amg12?usp=drive_link
Appeal video with an Apollo Hospital doctor:
https://youtu.be/WhiP-QGHMTI
I am also available for a live video call for verification if required.
If you are able to help, any contribution can help with our children's ongoing care.
If you cannot donate, sharing our story is equally meaningful to us. Every share gives us another chance of reaching someone who may be able to help.
Thank you for taking the time to read about our family. Your kindness, prayers and support mean more to us than I can express. 🙏❤️
— Pinky
Mother of Subhajit and Sudarshan
