Ayaansh needs the world’s most expensive medicine

It is heart-rending and devasting for Rupal and Yogesh Gupta to see a doctor giving up on their son. Among many doctors, one of them has explicitly mentioned that no one can do anything to ease the pain of their son, but instead just love him for the remaining days. As parents, this is something unimaginably traumatic to digest.

The pictures here are of Ayaansh who is Rupal and Yogesh’s beloved son. Ayaansh was diagnosed with Spinal Muscular Atrophy (SMA). SMA is a very complex health condition due to the lack of SMN1 gene. It starts a chain reaction in the human body as well. It is distressing to learn that little Aayaansh, who should be playing and hopping like any other kid, is unable to walk or have simple pleasures of his childhood. Due to extremely lethargic muscles in the lower body, leg stamina has deteriorated over the course of time.

Ayaansh was born on 27th May 2018 and his parents were the happiest just like any couple. But, when baby Ayaansh was 6 months old, the couple realized that his son is not showing any milestones needed for the child’s development. Ayaansh was not crawling or sitting. Initially, Guptas thought it is common to have delays in development but when Ayaansh didn’t even hold up his neck at 8 months of age, the parents were worried and took him to Rainbow Children’s Hospital.

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Eventually, with the help of specialists, the parents found out that Ayaansh is suffering from SMA, a life-limiting condition and the majority of children’s (approximately 95%) life expectancy is less than 18 months. SMA is a multidimensional disease and the family had to visit many experts from Neurologists, pulmonologists, Orthodontists, Physiotherapists, nutritionists .“We felt our lives were shattered when the doctors said that he will not live for more than 4-6 years.”

At present, Ayaansh is 2 years and 8 months old and he is suffering from chest deformation called pigeon’s chest, which requires physiotherapy daily for at least 4-5 hours. The little boy cannot swallow and hence, kept on a liquid diet. If forced, he throws up and sometimes, vomits even 5 times a day. He needs BiPAP support for breathing for 12 hours a day.

The doctors have confirmed that Ayaansh needs the world’s most expensive medicine – Zolgensma and it is the only ray of hope for the parents. Since medicine is expensive, it is not possible for middle-class families like Guptas to arrange the treatment for their son. And, Zolgensma costs a whopping 16 crores. Little Ayaansh needs your financial support. Please donate and help the family come out of the pain. With the little money you contribute, the boy can be relieved from his daily torture.