Help Khyati,10 months old fighting with Spinal Muscular Atrophy Type 1 | Milaap
This is a supporting campaign. Contributions made to this campaign will go towards the main campaign.
Help Khyati,10 months old fighting with Spinal Muscular Atrophy Type 1
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Need Rs.10,00,000
  • D

    Created by

    Deepak
  • BK

    This fundraiser will benefit

    Baby Khyati

    from Bengaluru, Karnataka

80G tax benefits for INR donations

This is an additional fundraiser page for Baby Khyati. I am Raman NVSL, raising funds for my 10 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. She is currently assisted with 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 considering my annual income.

Fundraising Activities:
We also started crowdfunding two months back on various platforms. We still need Rs.14-crore for the 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.

Crowdfunding 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:
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

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