Help Khyati to fight against Spinal Muscular Atrophy (SMA) Type 1

Note: You can increase your impact through the GE Foundation’s Matching Gifts Program.  GE Employees who make eligible donations of USD$25 or more (or equivalent) to Khyati's Give India link can register for a match by visiting the GE Foundation Matching Gifts website - click "GE Participants" to log in using your GE SSO ID and password. Search for the charity to begin the gift registration process (you will be asked to enter details such as donation date and amount.  Mention donor designation as "Give India Khyati".

The search will default to an employee’s work country, but employees can search for charities in any country). Please note that donations should be made directly in the Give India link (i.e. this link) first – the Matching Gifts website is for matching registration only.

About Khyati:

Myself Raman and my wife Joshna, raising funds for our daughter Khyati’s medical treatment. Khyati has been diagnosed with Spinal Muscular Atrophy (SMA) Type 1 at an age of 4 months. SMA Type 1 is one devastating disease waste away all muscle activities in infants and takes away their life before they turn 2 years.

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, infants with SMA Type 1 cannot survive beyond 2 years of age. 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 fundraising few months back on various other platforms. With all support from well-wishers like you, we raised Rs 11.4 Crores (gross collection as on Mar 2, 2022). We need remaining amount for providing access to gene therapy to Khyati. This is an additional effort we are making using Give Foundation to enhance our fundraising effort and expedite the availability of 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.

Fundraising 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:

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