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Hyderabad-based couple Rupal and Yogesh Gupta have taken to crowdfunding on ImpactGuru.com to cover the cost of Zolgensma therapy as their 2-year-old sonAyaanshis diagnosed with Spinal Muscular Atrophy (SMA) Type 1.
SMA is a rare genetic disease that attacks the babyÂs nerves and muscles, and as it progresses, makes it extremely difficult for the child to carry out basic activities like sit up, lift their head, swallow milk, and even breathe. SMA is currently the leading genetic cause of infant death worldwide, and it affects 1 in 10,000 babies.
Currently, Ayaansh is of 2 years and 9 months of age and has a chest deformation called pigeonÂs chest. The child requires physiotherapy daily for at least 4-5 hours. Baby Ayaanshis on a complete liquid diet as he is unable to swallow properly. On an average day, he vomits around 5 times. He needs BiPAP support for breathing for 12 hours a day and often suffers from sleep apnea. Even when he has a cough, the little boy needs a tube i.e. catheter to remove the phlegm.
The only ray of hope for Baby Ayaansh isZolgensma, a one-time gene replacement therapy. Commercially Zolgensma is available in the USA for approximately USD $2.1 million (INR 16 crores). But the worldÂs most expensive medicine is not possible to arrange for a middle-class couple like the Guptas.
This is the ideal time for little Ayaansh to take the medicine as it is only approved for children who have a bodyweight of fewer than 13.5 kilograms. AyaanshÂs weight is 10 kilograms.
In a heartfelt appeal, AyaanshÂsparents said, ÂPlease donate on our ImpactGuru fundraiser (https://www.impactguru.com/fundraiser/donate-to-ayaansh-gupta) to relieve little Ayaansh of the daily torture of his condition. Every small amount will be one step closer to the required amount. Even sharing this story on social media platforms will be of immense help.Â
In three weeks, Baby AyaanshÂs ImpactGuru fundraiser has raised over Rs. 2.50 crore cumulatively contributed from 8,400+ donors.
Baby AyaanshÂs ImpactGuru fundraiser update on 19th February 2021 read: ÂCheers to you and us! We have crossed our second milestone by raising Rs. 2crore+ on Ayaansh’s fundraiser. We have 14 more milestones to celebrate together and then the biggest one- Ayaansh getting the world’s most expensive drug, Zolgensma.
Thank you, for your amazing response to our SOS call. Without your constant inspiration and love, we would have probably crumbled under the pressure of arranging Ayaansh’s life-altering crores. But we stand strong because we have you by our side.
Do keep sharing Ayaansh’s story to make it go viral. We need all your help to save our sweet boy and on time. Help us.Â#AyaanshFightsSMAImpactGuru
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