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I am Raman NVSL, raising funds for my 19 months old daughter Khyati. My daughter Khyati has been diagnosed with Spinal Muscular Atrophy (SMA) Type 1 at an age of 4 months. It’s a rare genetic disease.
Baby Khyati is suffering from symptoms like difficulty in holding her neck, labored breathing, difficulty in swallowing, and inability to move her legs like any other normal infant of the same age. Currently she is on feeding through a percutaneous endoscopic gastrostomy (PEG) tube and assisted with tracheostomy tube and a Bipap machine for breathing. If not treated, the 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.
Treatment Options:
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.
Baby Khyati is suffering from symptoms like difficulty in holding her neck, labored breathing, difficulty in swallowing, and inability to move her legs like any other normal infant of the same age. Currently she is on feeding through a percutaneous endoscopic gastrostomy (PEG) tube and assisted with tracheostomy tube and a Bipap machine for breathing. If not treated, the 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.
Treatment Options:
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.
Fundraising Activities:
We also started crowd funding few months back on various platforms. This is an additional effort we are making through "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 was 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:
With folded hands urging you to donate whatever you can with your kind heart to save Baby Khyati’s life. Please follow and share 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 in life-saving 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
