"Help Khyati beat Spinal Muscular Atrophy"
"Help Khyati get the world’s most expensive drug to survive"
Many people told them that they should not keep hopes as it is impossible to arrange Rs 16 crores for the world’s most expensive drug to save Khyati. Her parents refuse to give up hope because a cure is available to save her life. “Every morning when she wakes up, she smiles and that gives us a lot of hope” mentions Raman with a longing smile.
She is just 1 year old and has to endure a disease that is worse if not just as bad as cancer. Why is it that her life has a price tag for the world’s most expensive drug? Every time she smiles her parents can’t help smiling and also can’t help but wonder if this smile will be taken away from them.
Adorable Khyati was born on 31st August 2021 and entered the life of Joshna and Raman like a ray of sunshine. She had the most contagious smile and could brighten up any room. The entire family took every last precaution to keep her safe as she was born right in the middle of the lockdown.
Once she turned 6 months old they noticed that she didn’t have much neck control and took her to their pediatrician. That one visit to the doctor was the first step in a perilous and long journey. One consultation lead to several others and many expensive diagnostic tests. The doctor’s words when he announced the results to them still ring in their ears and haunt their lives.
Khyati was suffering from a very very deadly and dangerous disease - SMA. In this, the gene responsible for the entire muscle function of the body is missing or severely defective. So the child keeps losing out on muscle functions until they eventually lose their life. 95% of children affected by SMA lose their life before they turn 2 years old. While the parents were trying their best to save her from COVID and make sure that she remains protected, something even more deadly sneaked into their lives and has held their baby girl in its grip. But what made them crumble was the fact that Khyati can be saved with a medicine that is far far away from their reach. The worlds’ most expensive drug costing $2.1million - ZOLGENSMA.
FDA has approved 3 medicines for treating SMA however, none of those is available to Khyati because her parents cannot afford the exorbitant cost of crores. Zolgensma is the best option for Khyati as it is a one-shot drug that is approved only for kids under the age of 2. Besides research has shown that the sooner it is administered, the better is the patient’s recovery. Hence the doctors have recommended that she receive Zolgensma before she turns 1 at the end of August 2021.
Today Khyati is 9 months old, needs Bipap respiratory support for almost 18 hours and the time is simply increasing every single day. She cannot lift her head at all and is on the bed all day. She needs daily physiotherapy and has to be given nebulization thrice a day. She faces a lot of difficulties swallowing food and even while drinking water. The movement of her limbs is decreasing rapidly, her muscles are deteriorating and even when she sleeps at night her parents have to change her position as she cannot do it on her own.
Khyati’s 5-year-old elder brother has become very attached to his baby sister. When she cries, he calms her down by showing her a toy or talking to her. He washes his hands diligently before going near her and knows that something is wrong with her as he often asks “why does she have a pipe in her nose? Why is she not sitting with me? Is she sick? Will she be okay soon?”
The little girl is rapidly losing out on time and the only way she can receive this life-saving treatment is with your help. Without this treatment, she will not be able to survive and be taken away from her family. The grief of losing a child is something that parents never get over and no one deserves to go through it.
Joshna and Raman didn’t know what they could do to save their baby’s life when they started this fundraiser but then your help made them realize that all hope is not lost. The power of “us” is immense and can help save the life of this innocent little girl. Any and every donation will take her a step further to receiving this life-saving cure. Even a share by you on social media will be a huge help. So please help out in whatever way you can to give Khyati a fulfilling and healthy life.
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