Hi, everyone. We are Polyane and André, parents of little Ravi, and today we are opening our hearts to share our story.
In 2021, we experienced a pain no father or mother should ever have to feel: we lost our daughter, at 17 years old, to a rare and devastating disease.
At that time, I was 7 months pregnant with Ravi, and we never imagined that, shortly after, we would have to face that same battle again.
Ravi was born and developed like a healthy child. Until he was 1 year and 6 months old, he crawled, stood up, babbled a few little words, and filled our home with hope.
But little by little, we began to notice something that broke our hearts: Ravi started losing abilities he had already gained.
Then came the investigations, the exams, the fear, and the anguish. And then the diagnosis... INAD
We knew that time was precious. At 1 year and 10 months old, through a genetic test called Exome sequencing, we received Ravi’s diagnosis: Infantile Neuroaxonal Dystrophy, known as INAD.
It causes a child to gradually lose movement, speech, independence, and essential functions. Today, Ravi is only 4 years old, and we are racing against time.
Our little boy has already lost many abilities. He uses a wheelchair, can only sit with support, and needs constant care.
Ravi does physical therapy, speech therapy, and occupational therapy three times a week, in addition to appointments with an orthopedist, pediatrician, neurologist, and ophthalmologist.
In the United States, there is an organization called INADcure Foundation, which has been funding research for gene therapy for years. This treatment is currently considered the only possibility capable of slowing the regression of the disease and giving Ravi a real chance to become a normal child again.
Our greatest dream is for Ravi to be able to participate in the studies and have access to this therapy. For this reason, we created this campaign with the goal of raising funds to cover the treatment expenses and everything that will be necessary throughout this journey.
The amount raised will be used to cover Ravi’s treatment expenses, as well as the necessary costs for travel, staying in the United States for around 3 months, medical follow-up, exams, care, and support during this decisive period.
We know this is a very high amount, but for us it represents something priceless: our son’s life.
This is not just a fundraiser. It is the chance for our son to live. It is the hope that Ravi can continue smiling, receiving love, being cared for, and, who knows, also helping open doors for other children facing the same disease.
We have already lost one daughter to INAD.
We do not want to lose Ravi too.
You can help by donating any amount. Every donation, no matter how small it may seem, brings us closer to this chance. And if you cannot donate right now, share this story with friends, family, churches, institutions, and on social media.
Ravi needs us. Ravi needs you. Help us give our son his only chance to survive.
Donate, share, and be part of this chain for Ravi’s life.
Follow us on social media: @polyanecristina12 @ajude_o_ravi @dondoobrasil
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