Delhi parents seek crowdfunding for treatment of infant’s rare disease

10-month-old Rehansh Suri is suffering from Spinal Muscular Atrophy Type I, a rare genetic disease that affects the central nervous system. Parents of Reyansh have begun a campaign seeking crowdfund for a US-based Gene therapy, the only available treatment, which will cost Rs 16 crore. “He's suffering from Spinal Muscular Atrophy Type I, a rare genetic disease. He can only be treated with a US-based Gene therapy worth Rs 16 crore. We can't afford it," said Rehansh’s mother. Dr Anne Mathew, who is treating the child, informed children having (SMA) Type 1 disease don’t survive beyond two years. “Children with this disease don't survive beyond 2 years. He's fine now but is going to get weaker and won't be able to sit, swallow or breathe. There's only one treatment where he can be given a missing genetic code via virus. It's a one-shot cure and most expensive drug,” said Dr Anne Mathew to ANI.