Bengaluru 10-months-old Awaits World's Most Expensive Injection To Survive.

 Khyati's family is banking account crowd-funding to help get the world's most expensive drug, Zolgensma. Till now, they have been able to raise only Rs 3.3 crores. 

 Bengaluru: A 10-months-old in Bengaluru, Karnataka , is fighting for her life as she waits for a medicine that costs a whopping rupees 16 crores. Diagnosed with spinal muscular atrophy (SMA), TYPE 1, The child, khyati, needs the medicine for gene therapy before she turns tu if she is to get a fair chance for survival. Khyati's family is banking upon crowd-funding to help get the world's most expensive drug, Zolgensma. Till now, they have been able to raise only rupees 3.3 crores.

Khyati's mother, jyoshna, said she is desperate for help to give her child a healthy life.  " This is the age to play with toys. But my daughter is suffering from the last 6 months. Cheese with machines only. Please help us in her treatment".   She said the baby was diagnosed with the progressive neuromuscular disease after she struggled with simple tasks, considered development milestones, such as being able to lift her head at 3 months of age. Her parents consulted doctors and waited a month before  DNA testing confirmed spinal muscular atrophy when she was 5 -months-old.

The person diagnosed with disorder is unable to control the movement of muscles due to loss of nerve cells in the spinal cord and brain stem. It is treated with the help of gene therapy. Which is expensive.

Raman, khyati's father, said: "our little 10-months-old girl, khyati, has been diagnosed with spinal muscular atrophy type 1. It is a rare genetic disease and is 100% fatal in children. She had difficulty in breathing and swallowing. And she was not able to crawl like any other child of the same age". There is a treatment available, it costs 16 cross. Definitely we were not able to report that kind of huge cost, He added. " We started crowd-funding for her treatment and so far, with friends and family and relatives, where able to rise close to 3.3 crores.

And online crowd-funding process has also been started for khyati on Milaap website -- Milaap.org/khyati 

Direct link to donate: https://milaap.org/fundraisers/support-nagumantri-v-khyati 

The officials at Bangalore Baptist hospital, which is handling Khyati's case, said they have been helping 23 children with the same disease -- seven of them have received the expensive gene therapy, including five in the last month, with medication free from Novartis.

Novartis follows a lottery system to provide the expensive medicine free-of-cost to help with the applications. Some children who failed to receive the therapy died due to the disease.

Last month, thousands of people had come together online to save the Life of a three-years-old boy Hyderabad, Telangana, by helping him get the injection through crowd-funding to treat a similar genetic disorder.

Hai my name is Shiva Shankar, please help khyati you come out from the deadly SMA🙏🙏🙏🙏🙏. Please donate as much as you can.