Washington, DC [US], March 3 : Little Hridyansh is fighting the most severe form of Spinal Muscular Atrophy (SMA) Type 2, which causes the wasting of voluntary muscles and impairs breathing.
The boy's father, Naresh Sharma, who is a police sub-inspector posted in Rajasthan's Bharatpur range, is helpless, watching his 21-month-old son each day who needs constant care.
Just weeks ago, the family was informed that Hridyansh can sit but can't stand or walk independently.
"We want to try gene therapy for our son, which the doctor has recommended as the only cure, but one dose alone costs around Rs 17.5 crore. It's a huge amount for me and my family. We simply can't afford it," Naresh Sharma, Hridyansh's father told ANI.
According to the family, SMA is causing irreversible damage to little Hridyansh's muscles, which can only be stopped with timely treatment.
The cure for Hridyansh is Zolgensma gene therapy is one of the most expensive drugs in the world. It is given as a one-time dose, usually to children under two - with just two months in hand, the boy's family is desperate and hoping for a miracle.
US-based Rajasthan Alliance of North American (RANA) and Jaipur Foot USA members have stepped forward to contribute and raise funds for little Hridyansh.
"We have formed a committee comprising four doctors: Dr Shashi Saha, Dr Raj Modi, Dr Sharad Kothari, and Dr Vijay Arya who have already begun working with Novartis (drug manufacturer) to explore avenues for providing the necessary injection to Hridyansh. We are optimistic about the potential benefits for this young boy," Prem Bhandari, the president of RANA told ANI.
Like Hridyansh, many parents in India cannot afford to buy Zolgensma and other SMA drugs.
While there is no official data on the number of Indians with the disease, existing literature shows that SMA affects nearly 1 in 10,000 live-born babies - (Spinal Muscular Atrophy Therapeutics in India: Parental Hopes and Despair! - PMC) according to a study, 1 in 38 Indians are carriers of the faulty gene that causes SMA, compared with 1 in 50 people in the West.
Prem Bhandari, a prominent Indian American community leader, is hopeful that his organizations may be able to pull together some funds to pay for Hridyansh's treatment.
He added that the Rajasthan diaspora will appeal for funds globally for the child's treatment on social media platforms and other networks.
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