RAGHAV’s STORY

A rare condition is not so rare when it affects someone close to your heart.

Raghav was born on Aug 2018. Life was just perfect when I held the chubby little boy in my hands. Four hours after Raghav was born, Doctors came up to us and said “Your son is different, we don’t know why!”. We searched for answers for an year by conducting all possible medical tests. A big break came on his first birthday. Raghav was diagnosed with a ultra rare genetic condition caused by mutation in a gene called GPX4. Only two other babies were reported to have it. Both of them passed away few weeks after birth.

Doctors were merely happy that Raghav was still alive!

Raghav’s future was described as wheel chair bound, non-verbal and prone to pre-mature death

This is a future no parent wants for their child! Raghav is over one year old, but cannot sit up without support. He doesn’t have the muscle strength to hold a toy in his hand. He doesn’t have the oral strength to swallow food. He cannot hear normally. His bones are not developing as expected. We really don’t know what his future looks like.

Will he walk? Will he run? Will he go to college? Will he even live long enough to go to college?

As of today, there is no treatment for Raghav. Our only option is to “monitor him closely”. In other words, we have to wait until his symptoms get severe, give him some pain killers, and comfort him hoping things will get better tomorrow. Is there a possible treatment in the future? NO. No research labs are working on this problem.

But, there is hope!

After weeks of reading research papers, cold calling research labs and attending rare disease conferences, we are now the experts in Raghav’s condition. We have brought together a team of researchers and doctors who can find a cure for Raghav. We now have a plan!

Be the miracle Raghav deserves

We need $5-7 million dollars to give Raghav a chance at a meaningful life.

Your donation can make a difference not only to Raghav, but also to other kids affected with similar conditions. Each dollar takes Raghav one step closer to living life the way you and I do. Donations are tax deductible.