Save Vedansh from SMA

01/07/2022

Today on National Doctors Day , Vedansh's 'Life saving Designer Gene' turns 1 - first anniversary of Zolgensma infusion.. Exactly a year ago Vedansh received 'Zolgensma' - the world's costliest drug.
He was diagnosed with Spinal Muscular Atrophy type 2 at 15 months. After months of Fundraising , multiple hospital visits , sleepless nights, difficult days for months on end, Vedansh received Zolgensma on July 1st 2021 - the date which will always be remembered , a day to celebrate.
Post Gene Therapy the journey is kind of a roller coaster ride with multiple blood tests (weekly, monthly) since he was on steroids with very low immunity, A simple cold or spit-up would lead us to multiple visits to hospitals. The journey has been steady with slow progress, he is able to sit without support (but needs assistance from sleeping position to sitting position) and able to walk few steps with the help of walker and support (again needs assistance from sitting position to standing position). He is undergoing physiotherapy and regular check ups. With all of your help and blessings today we are able to see Vedansh walking few steps with walker and our support. We are confident that he will over come everything to lead a long, fulfilled life. Today again we whole heartedly thank each one of you for helping and holding our hands in saving Vedansh from this progressive neuromuscular disease and giving new hope.
July 1st,2021 will be a date forever etched in our lives. Day our Vedansh was reborn.

Thanks,
Vedansh , Pavan and Vaishnavi

29/09/2021

An update on Vedansh , since administering Zolgensma, Vedansh has put on little weight, looks healthy and is able to stand for few minutes with a little help.
Again , thank you all for your blessings and your help :)

01/07/2021

Finally, with God’s Grace and all your blessings, Vedansh has been administered Zolgensma today.

Thanking all of you again, for all your support.

30/06/2021

We are very happy to announce that Vedansh has won the lottery which was held by Novartis for the Rs 16Cr drug(Zolgensma). He will be administered the drug within a week or two.

When we started the fundraiser, we received immense help from each and everyone from every corner of world. This proves that humanity still exists.

It is only because of your prayers and blessings that this is happening and we would like to thank each and everyone one for helping us throughout.

The amount collected through the fundraiser will be used for his further treatment. Please do get back to us if you have any queries regarding this.

Thanking you,
Vedansh’s Family

27/05/2021

He is vedansh(19 months ),Our little bundle of joy.He looks very normal as u see,very talented,bright kid who is suffering from deadly genetic disorder called SMA type2.SMA is progressive and fatal.Please come forward to save him so that he can have his childhood like other normal children.Please donate to below link and share as much as possible
https://www.impactguru.com/fundraiser/help-vedansh-ip

06/05/2021

🙏🙏Thanks a lot people of phoenix and Arizona for the immense help you pored to save vedansh from SMA by supporting the Food for cause campaign 🙏🙏.Words are very less to express our gratitude and heartfelt thanks to Jagadeesh and friends who together made this campaign successful.A big Thanks to Your hardwork and precious time spent inspite of Covid pandemic 🙏🙏🙏.❤️Heartfelt love and thanks from Vedansh and his parents(Pavan and Vaishnavi)❤️

19/04/2021

People in Phoenix, Arizona please order and donate. This is to help Vedansh!

19/04/2021

Vedansh Needs Your Help To Battle SMA And Win! - visit http://impactguru.com/s/fTRgC0 to contribute and share the story.

10/04/2021

30/03/2021

We humbly thank , and for helping us in this cause. We again ask you to please donate and help spread the word.

https://www.impactguru.com/fundraiser/help-vedansh-ip

20/03/2021

My son Vedansh needs your help and support ....kindly share and donate....

Help Vedansh Raise Funds to Fight SMA (Rare Genetic Disease) that could cripple him and shorten his lifespan if not treated within the next four months

20/03/2021

Hello all My Name is Vedansh and I am just 17 months old , like all other kids I love to play with toys , run , walk , crawl and be like any other normal kid. But I am not because I am born without a gene called SMN1. Kindly help me get a new gene by sharing and donating so that I can also enjoy my childhood and be normal like other kids.

Link for sharing and donating -

https://www.impactguru.com/fundraiser/help-vedansh-ip

About SMA -
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, 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.

Help Vedansh Raise Funds to Fight SMA (Rare Genetic Disease) that could cripple him and shorten his lifespan if not treated within the next four months

19/03/2021

I want to blow bubbles all day! But no one lets me 🥺

17/03/2021

17/03/2021

17/03/2021