My Hurdles Hi, I am Deeksha Sampath, nine years old from Bangalore, suffering from a rare disease called SMA; it is killing all my physical abilities day by day. At...
Digging Deep After 21 years of struggling with my condition, I finally got my diagnosis – Cystic Fibrosis. There were many dark days with doctors giving me not more the...
DISCOVERING HOPE The day I realised what hope means was the day I realised that I have never known “good health” on a single day in my life, and that...
How Chandra solved the mystery of his missing baby brother! [ Narrated by the parents Geetha and ‘Nary’ Narayanaswamy] We visited the US East Coast about five years ago. We...
Hello friends, My name is Jeevan Kaneria and i have been suffering from GBS (Gullian Barry Syndrome) in Indore, Madhya Pradesh India since April 1, 2016. This disease makes the...
By Vidya C.A. My 9 year old son is a rare disease patient. He has Hunter syndrome. Because of this disease both physical functioning of his body and cognitive skills...
Entering the COERD Centre of ORDI at IGICH, I was welcomed by the young chirpy voices of Ritika and Jhanvi (name changed for patient privacy reasons). Listening to their conversation...
Lalith is a father of two children with Sanfilippo syndrome. In this blog he shares his families story and his hopes for the future of research. Sanfilippo syndrome (MPS III)...
