Vihaan was born on Feb 14, 2015 (yay..Valentines baby!) with a very rare genetic disorder called Cornelia de Lange Syndrome (CdLS). He has a spontaneous mutation on SMC3 gene which only accounts for < 2% of all CdLS cases. 
A very rare genetic disorder affecting Vihaan’s every vital organ
Over the last 6 years, Vihaan has been bravely fighting the myriad problems that result from this devastating syndrome. Please read about the characteristics of the syndrome here. But in spite of these challenges we are always amazed at how wholeheartedly he laughs and runs around without a bother in the world. Everyday activities such as talking, eating, listening and seeing clearly which are so normal to all of us are massive challenges for Vihaan but this has not stopped him from spending hours in therapy sessions on a daily basis learning how to lead a life that most of us simply take for granted.
Vihaan is our HERO!
We strive to make a difference in the life of Vihaan and give hope to other kiddos living with Cornelia de Lange Syndrome as that is the only way to make our own lives richer and the world a better place. No matter how bad things may seem for us we are luckier than 99% of the people in the world.
Monumental effort
Over the last 6 years, we have spent countless hours trying to help Vihaan. From visiting several doctors across the United States to taking him to speech, occupational, physical, feeding, behavior and other developmental therapy sessions, a monumental effort has gone into the goal of giving Vihaan a normal life. We are far from done as Vihaan still has miles to go before he can spend a normal life that every child truly deserves to live.
No treatment today
SMC3-CdLS is so rare that we don’t even have basic understanding of the mutation at the molecular level. Needless to say, there is no treatment for Vihaan as of today. The only option given to us, is to take it by the day and hope tomorrow is better. There is nothing to look forward to in the future as no scientists or labs are working on the much needed research.
Vihaan needs the support of generous people like you to fund scientific research into SMC3 (and other mutations that cause CdLS). With the help of the United States CdLS Foundation, we have put together a team of experts to take the mission forward. Thanks to recent advances in biomedical science, new approaches for treating genetic conditions, such as gene therapy, are rapidly become feasible. Before such treatments can be considered for Vihaan or other children with his condition we need to learn much more about SMC3-CdLS. Your donation can make a world of difference not only to Vihaan, but also to other kids affected with CdLS. Each dollar takes Vihaan one step closer to living life the way you and I do. The CdLS Foundation will target your donation for research related to SMC3-CdLS. Donations are tax deductible.
HE IS OUR LITTLE TROOPER, WITH SO MANY ASPIRATIONS IN LIFE
Giving HOPE!
Please follow this page for goals and deliverables. Vihaan’s genetic syndrome, Cornelia de Lange Syndrome (CdLS), does not have an approved treatment today. Thanks to recent advances in biomedical science, new approaches for treating genetic conditions, such as gene therapy, are rapidly become feasible. Before such treatments can be considered for Vihaan or other children with his condition we need to learn much more about SMC3-CdLS. Your donation can make a difference not only to Vihaan, but also to other kids affected with CdLS. Each dollar takes Vihaan one step closer to living life the way you and I do. The CdLS Foundation will target your donation for research related to SMC3-CdLS. Donations are tax deductible.
