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Spinal Muscular Atrophy (SMA) – Deeksha Sampath

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 the age of 1, when I had to crawl and pull out the things and mess up the house, I was busy roaming hospitals just to find what exactly has happened to me. At the ages 2 to 4, I had to walk by myself and pull or push someone or something but doctors were busy pulling out my blood. When all others were playing and jumping on the road, my physiotherapist was giving me stretches and exercises. When children played clay I was busy playing putty, each time I saw my friends I wished, what if I was them. Ages 5 to 9, slowly I left walking and I have become closer the wheelchair who is my best friend, without that I can’t see the world. Please God, give me independence from my wheel chair, I want to act like Pooja Hegde.

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Our Executive Director Mr. Prasanna Shirol was a part of First Ever summit dedicated to advancing equitable care for rare diseases in older adults. The meeting was attended from 25 countries across Canada, Latin America, Europe, and Asia, representing patient and caregiver communities, patient advocates, healthcare professionals, and healthcare policy experts. This is a short video highlighting the impact of the initiative to date, in the words of the COLLABORATE Community.

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