This is Yuri, a 3-year-old boy, diagnosed with INAD , a degenerative disease
ultra rare.

Hello, we are Daniele and Kayo, Yuri's parents. We are from Cuiabá, Mato Grosso. We created this campaign with the intention of giving our son the only chance he has to live.

Until he was 1 year and 3 months old, Yuri was a normal baby. He crawled, tried to take his first steps and said a few words like "mommy" and "grandma". After that, he stopped and we began an investigation that would take more than 8 months and many tests. When he was almost 2 years old, Yuri's skills quickly declined. He stopped saying words, lost strength in his legs, and stopped crawling and sitting up by himself. It all happened very quickly. We parents were desperate and the investigation accelerated.

In May 2024, through a broad genetic test called Exome, we discovered that Yuri has an ultra-rare disease called Infantile Neuroaxonal Dystrophy (also known as INAD or DNAI).

Our world fell apart. Our only son, when he was diagnosed, was practically given a death sentence. We learned then that the disease would quickly continue to take everything from him: all his strength, his vision, his hearing, his ability to chew and swallow, to smile and finally to breathe. We also learned that most children with INAD die between the ages of 5 and 10. We lost our footing.

There is only one hope that Yuri's smile will not be lost and that he will be able to live and not suffer anymore. We discovered an NGO in the United States called INADcure Foundation, which for the last 10 years has been funding studies for gene therapy, the only treatment capable of stopping the disease. In 2025, they are finally close to the clinical testing phase in humans so that the drug can be approved by the FDA.

Our goal is to include Yuri in the study to save his life and help save the lives of other children suffering from INAD.

In the video below, we tell a little about our story to TV Centro América, an affiliate of TV Globo in Mato Grosso.