Hello friends and well-wishers,
Vedansh has everything, from loving parents to a plethora of toys. But none of this compares to what he truly requires: freedom from a fatal disease that is determined to take his life. After Spinal Muscular Atrophy Type-2 took his basic abilities to sit, crawl, walk, eat and breathe, all that remains is his cute little life. The miraculous drug that can save his life costs Rs 16 crore. Will the little munchkin make it without your support?
My name is Pavan and I am raising funds for my 17-month-old son, Vedansh who is suffering from a Rare Genetic Disorder called SMA (Spinal Muscular Atrophy) type II. Vedansh needs Zolgensma within the next 4 months which costs Rs. 16,00,00,000(2.2 million USD). Otherwise, he would require Spinraza once every 4 months for a lifetime. The cost of which would be Rs.87,00,000 per dose which brings it up to 2crore-3crore annually.
This isn't just a fight against SMA but also against time. Help us reach the goal amount within 4 months which will be possible only through your support and blessings. So I request all of you to donate and share this fundraiser to help us get Vedansh his Zolgensma.
What is SMA (Spinal Muscular Atrophy) type II?
Spinal muscular atrophy type 2 (SMA2) is a genetic neuromuscular disorder that affects the nerve cells that control voluntary muscles (motor neurons). Without treatment, progressive muscle weakness develops in babies with SMA2 between ages 6 and 12 months.
Babies with SMA2 can sit without support, but this milestone is lost as time progresses. They cannot stand or walk independently. Feeding and breathing problems also develop. Many children will develop scoliosis as they age, and abnormal curvature of the spine resulting from weakness in muscles supporting the spinal column.
SMA2 is caused by changes (pathogenic variants also called mutations) in the SMN1 gene and is inherited in an autosomal recessive manner.
Life expectancy can range from early childhood to adulthood, depending on the severity of the patient's condition.
WHAT YOU CAN DO TO HELP
- Donate money: Please donate with your heart so we can save Vedansh’s life.
- Contribute your time: We are in for the long haul in our fight against this deadly disease. The best course of action is to raise awareness and get the necessary infrastructure set up in India. Only time and continuous lobbying will contribute to long-lasting change.
- Spread the word: Healthy parents could have a genetically affected baby. Genetic testing is in a nascent state in India, with limited labs and clinics available for diagnosis. Tell others about genetic testing, so this becomes a common practice as it is in most western countries like the USA and Canada, where genetic screening is part of post-natal care.
Zolgensma, the world’s costliest drug priced at Rs 16CR is a one-shot treatment that will help in Vedansh’s treatment. Your support can save Vedansh- a child who deserves the world but right now is struggling to even breathe. Share his fundraiser with your loved ones so that Sarvam gets the push he needs to live beyond this horrid disease.
We will be forever grateful for your Help and Support in saving our Son's Life!
Follow Vedansh's Journey on social media:
Instagram: @save_vedansh_from_sma
https://www.instagram.com/save_vedansh_from_sma/
Twitter:@VedanshSMA
https://mobile.twitter.com/vedanshsma
Facebook:@VedanshSMA
https://www.facebook.com/100213728830900/posts/100339795484960/?d=n
The goal amount of the campaign may be higher than the attached estimates to address and aid the post-hospitalization expenses/contingencies including but not limited to prolonged medication, diagnostics, rehabilitation therapies, and follow-up doctor visits/consultations which vary from disease to disease.
