Skip to main content

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.








Comments

Post a Comment

Popular posts from this blog

Stephen Hawking's theory about black holes may have been proven right.

  Turns out, black holes exert pressure on all space surrounding them. Hawking had predicted that black holes emit radiation in 1974, implying that the objects have temperature. In addition, Hawking claimed that black holes slowly shrink over time if no accumulation of gases (accretion) takes place.   Scientists from the University of Sussex - Professor Xavier Calmet and Folkert Kuipers published their findings in Physical Review D. The researchers were probing the event horizon (a black hole's boundary) of a black hole when they made the startling discovery.  They were looking an entropy at the event horizon of the black hole, which is essentially the chaos embedded into any physical object and its progression from calm to mayhem.  While reading the calculations, the scientists kept running into an additional figure which they couldn't explain. It took them months to figure out that it was actually caused by pressure around the black hole.   This pres...
Post a Comment
Read more

Facebook Page roles explained

What are the different types of roles for Page managers and who should be assigned which role? Image credits:  https://www.facebook.com/shiva1196/ 1. Admin The admin has the most authority and access of all the Page manager roles. An  admin can manage and assign all other Page roles and settings, so for security purposes, it’s vital that businesses strictly limit who has this role. An admin can also do anything any other role can do, including:      •Edit the page and add apps      •Create and delete posts      • Send messages via the Page      • Respond to and delete comments and               posts        to the Page       • Remove and ban people from the Page      •Create ads      •View Page Insights (analytics about the           Page)      •See who published as the ...
Post a Comment
Read more

Web results Water vapour detected on huge Jupiter moon Ganymede for 1st time

Astronomers have uncovered the first evidence of water vapour in the atmosphere of Jupiter's moon Ganymede using Hubble space telescope.   NASAs Hubble Telescope reveals first evidence for water vapour in Jupiters moon Ganymede. According to the study published in the journal Nature Astronomy on Monday, the water vapour forms when ice from the moon's surface turns from solid to gas. Previous studies have offered circumstantial evidence that Ganymede,  contains more water than all of Earth's oceans, NASA said. However, temperatures there are so cold that water on the surface is frozen solid, according to the US space agency. Ganymede's ocean would reside roughly 160 kilometres below the crust, therefore, the water vapour would not represent the evaporation of this ocean.  Astronomers re-examined Hubble observations from the last two decades to find this evidence of water vapour. In 1998, Hubble's Space Telescope Imaging Spectrograph took the first ultraviolet (UV) im...
Post a Comment
Read more