Baby Khyati is suffering with symptoms like difficulty in holding her neck, laboured breathing, difficulty in swallowing and inability to move her legs like any other normal infant of the same age. She is currently assisted with a BiPAP machine for breathing. If not treated, life span of infants with SMA Type 1 varies up to 1 or 2 years depending on the progression. Day by day Khyati’s condition is worsening due to reduced muscle activity.
Zolgensma gene therapy is a potential cure for SMA for children below two years of age and it has to be imported from the USA. Baby Khyati needs Zolgensma gene therapy as soon as possible to save her life. Zolgensma comes at an extortionate price of INR 16 crores (USD $2.125 million) approximately excluding taxes and duties. The price of medicine is beyond my reach considering my annual income.
We also started crowd funding two months back on various platforms. We still need Rs 14 cr for purchase of medicine. This is an additional effort we are making using Milaap Org. to enhance our fundraising effort and expedite the gene therapy availability to Baby Khyati to save her life.
Funds raised through all charity organizations will be combined and utilized for making payments to pharmaceutical companies or their authorized subsidiaries and hospital for purchasing the medicine including pre and post treatment care.
Crowd funding for similar medical causes were successful in India in recent instances for such a huge amount. On this note, we seek your strong heartfelt support in fundraising to save our Khyati’s life.
Donate whatever you can with your kind heart to save Baby Khyati’s life. Please follow and share about Khyati’s story on social media handles.
Spread the word:
Recently, we have been observing more and more SMA cases are visible due to developments on lifesaving therapies and medicines. Spreading the word on diagnoses and about the disease could save a few more lives.
For more details: https://linktr.ee/helpkhyati