Khyati needs the most expensive drug in the world to survive. Sounds unbelievable but the cost of the medicine is 16 crore INR (2.1 million USD). The medicine available as a cure for the Rare Disease SMA ( spinal muscular atrophy) is one of the most expensive medicine globally
The parents have decided to not give up their fight to save their child’s life. They have started a Crowd funding campaign to raise this amount.
Please do read , and share to reach maximum number of Donors who can help the Parents reach the target amount at the earliest.
Sharing the article / story – as received from the parents.
** Disclaimer – Possiabilities is not involved in the Fund Raising Campaign in any manner. The article / story is based on inputs received from the parents. Details of the campaign are included in the article, and readers are requested to contact directly.**
#Khyati fights SMA Campaign
Imagine if you are trying to breathe but not able to inhale air due to respiratory muscle failure … What will happen? Devastating isn’t it? Khyati is more prone to face a similar situation due to Spinal Muscular Atrophy (SMA). The BiPAP (Bilevel Positive Airway Pressure) machine, currently Khyati is being assisted with, expands her lungs so that she inhales and exhales air forcefully and gets sufficient oxygen supplied to blood.
The missing SMN 1 gene (main cause of Spinal Muscular Atrophy) in children causes insufficient supply of protein to motor neurons and makes them weaker and degenerated. The weaker motor neurons cause muscle weakness and eventually lead to organ failure. Human body contains more than 600 muscles, if any critical muscle gives up that may end as a fatal outcome.
In the current pandemic, we are learning a lot about oxygen concentrators, BiPAP machines, ventilators etc., Khyati’s sleeps are tied to a nose mask and a BiPAP machine (it’s a non-invasive ventilator). She has been suffering for the last 6 months.
I always wanted a daughter…
“We would always talk about plans for our then future-child. My husband and I always wanted a daughter. We have a six year old son. And the arrival of a daughter would complete our small family. And then, on the festival day of Onam (August 31, 2020), my baby girl was born. She was perfect. Her bright smile and curious eyes immediately melted our hearts.
But today, it doesn’t matter how she looks or what colour her eyes are. I just want her to be healthy and live. I want her to hold my finger when I touch her. I want her to raise her head to kiss me back. I want her to crawl and come to me. But the deadly march of her disease is slowly and cruelly taking her away from us. Every day, we are deprived of a little more of our parenthood. Every morning, I wake up with the fear of losing my beautiful baby” …Joshna, Khyati’s mother.
“We noticed Khyati was unable to lift her neck at 3 months of age then we consulted a family paediatrician. She advised us to wait for one month for observation. In her 4th month the doctor recommended a visit to a neurologist and marked the doctor’s observations in a file. On the way to consult a neurologist I read the statement “Impression: SMA Type 1?” then I googled what is SMA Type 1. I am unable to understand the first answer by google but my eyes moved when the second question came as a recommendation “what is the life expectancy of a child with SMA?” I read “18 months”. My eyes are filled with tears and unable to control myself for 5 minutes then read it again. It says 18 months unless pharmacological treatment is introduced. It makes my heart lite as there is an option in the form of treatment. I was talking to the doctor but not understanding anything except the second answer I got from Google. Finally after multiple doctor consultations and through SMA testing, it was diagnosed as Spinal Muscular Atrophy (SMA) Type 1.” …Raman, Khyati’s father.
SPINAL MUSCULAR ATROPHY (SMA) Type 1, a genetic disease that causes infant’s muscles to waste away, potentially killing them. Type 1 is the most severe and aggressive form of SMA. It is the # 1 genetic cause of Infant death globally.
Khyati has difficulty in breathing, swallowing. She is unable to lift her neck. Khyati is currently assisted with a BiPAP machine. She requires a onetime infusion of Zolgensma gene therapy that costs Rs. 16 Cr ($2.1 MM) in the next two months to save her life.
The longer we wait the more irreversible damage that can happen to Khyati due to SMA. Zolgensma stops the progression of disease immediately after infusion. So, it is important to provide her with the medicine as soon as possible.
In order to expedite the availability of medicine Zolgensma to Khyati, we started a fundraiser campaign in March 2021. It went well up to one crore in the first 7 days then it’s moving very slowly due to Corona pandemic second wave and lockdowns. So far we were able to raise Rs 2.5 cr and still need Rs 13.5 cr for medicine.
We are making our efforts on social media to get a few influencers to boost our fundraiser campaign. Till date, very few celebrities and comics responded well and posted about Khyati to their Insta stories and retweeted. But getting donations became a herculean task for us. However, the recent success stories of 4 babies keeps our hopes alive and motivated. Please consider Khyati in all your prayers. Please donate and share our message with your family and friends.
Donate with your kind heart: https://www.impactguru.com/fundraiser/help-baby-khyati
Please refer to the link below for latest updates.
Follow – website – savekhyati
, #savekhyati, #helpkhyati, #spinalmuscularatrophy, #Zolgensma