Help Baby Khyati battling with SMA Type 1
This is a fundraiser page for our 10 months old Baby Khyati battling with Spinal Muscular Atrophy (SMA) Type 1.
I am Srinivasa Prasad raising funds on behalf of my close friend Raman NVSL’s (native of Visakhapatnam, India) baby who lives in Bangalore, India. Raman's daughter baby Khyati has been diagnosed with most severe form of Spinal Muscular Atrophy (SMA) Type 1 disease at 4 months of age and currently she is under care of Bangalore Baptist Hospital in Bangalore, India. Raman’s family is also fundraising using local crowdfunding platform in India. However, they were able to raise only 7% of their goal till now. Hence, they are seeking our help to save Baby Khyati’s life.
Spinal Muscular Atrophy (SMA) Type 1 is the more severe form, usually diagnosed during an infant’s first 6 months. The disorder attacks the baby’s nerves and muscles, and as it progresses, makes it extremely difficult for them to carry out the basic activities like swallowing, breathing, sit up and lift their head etc.,
Babies with SMA Type 1 face many physical challenges, including muscle weakness and trouble breathing, coughing, and swallowing. If not treated, life span of baby with SMA Type 1 varies from 6 months to 2 years depending on progression of the baby conditions.
Baby Khyati is suffering with symptoms like difficulty in holding her neck, labored breathing, difficulty in swallowing (frequent vomiting of milk) and inability to move her legs. She is currently assisted with BiPAP machine for breathing. Baby Khyati needs gene therapy in next 1-2 months to save and maintain quality of her life.
The only potential one-time cure currently available globally is Zolgensma gene therapy for children below two years of age as prescribed by the consulting physician. It has to be imported from USA as no other treatment options are available in India. However, Zolgensma comes at a huge cost of USD $2.125 Million approximately and is out of reach for majority of families. Two other FDA approved drugs are also available but comes at par or slightly lower cost than Zolgensma and needing additional annual booster dosages.
We need your heartfelt support in fund raising to save our Baby Khyati’s life. No donation is small amount for this cause. We would like to emphasize this as an opportunity for all of us to save a precious life of a baby.
Funds raised through GoFundMe will be combined with simultaneous fund-raising effort in India and will be utilized for making payment to pharmaceutical company or their authorized subsidiary and hospital for purchasing the drug including pre and post treatment care.
Even sharing this story and increasing visibility on all social media platforms will help us in this long journey.
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Fundraising team (3)
Srinivasa Rama Vara Prasad Godaba
Raised $4,826 from 73 donations
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Raised $501 from 9 donations