Meet a 3-year-old boy with rare syndrome who lives in a room For three and a half years, Rhavi's address has been a room at the Hospital de Clínicas de Porto Alegre. It was there that the boy was born, grew up, celebrated birthdays and received baptism. Now, a court decision must make something possible that has never happened in his life: going home. Rhavi lives with a rare genetic condition, Noonan Syndrome. In the boy's case, the disease prevents the proper functioning of the intestine and the entire digestive system, which makes him depend on parenteral nutrition, receiving all nutrients directly through the vein. Furthermore, due to sequelae associated with lung prematurity, mechanical ventilation is required. ? Access the g1 RS channel on WhatsApp According to pediatrician Sandra Helena Machado, the first year of life was marked by several health complications. However, as time passed, the situation began to show positive developments. "He had a lot of health problems in his first year, a lot of complications, but at the same time he progressed and today, for a year or so, he has only been progressing", says the doctor. Treatments and hope Rhavi, 3 years old, with Noonan Syndrome Reproduction/ RBS TV Despite the challenges faced since the first days of his life, he is described by his family and medical team as a happy child, who continues to evolve and achieve important advances in development. The mother, Jéssica de Azevedo Bastos, accompanies her son daily. A public servant in Rio Pardo, she is away from work to dedicate herself fully to caring for the boy. According to her, doctors initially had little perspective on the child's survival. Rhavi remained intubated for the first few months of his life, underwent heart surgery at six months and only then did genetic investigations begin that led to the diagnosis of the rare disease. "My dream for Rhavi is that he survives. That he continues to be supported by God and continues to be a happy child", he reveals. The family's routine takes place entirely in the hospital. Jéssica shares the space in the pediatric ward with other patients and family members and organizes the day based on the constant care required by her son. She says she needs to follow strict schedules for therapies, medications and procedures, which prevents her from staying away from the boy for more than an hour. Meals are eaten in the institution's cafeteria or in the hospital's common spaces, in accordance with the unit's rules. Home care Although Rhavi remains hospitalized, professionals following the case assess that he is capable of living outside the hospital, as long as he receives specialized assistance at home. This care model, known as home care, includes multi-professional monitoring and adequate structure to ensure patient safety. The medical team highlights that the boy demonstrates understanding of commands, recognizes the people around him and shows progress in development. "I believe that if he goes to a place where he can develop more, he can evolve in this part of neuropsychomotor development", comments pediatrician Sandra. The discussion about home care reached the Court, which recognized Rhavi's right to the service paid for by the State. The family's lawyer, Alessandra Ludwig, states that the therapeutic plan cannot be fragmented. "Equipment, materials, supplies, procedures, multidisciplinary care are part of a single therapeutic plan, it cannot be analyzed in isolation. Everything there is essential so that Rhavi can be dehospitalized and go home safely", says Alessandra. In a statement, the State Department of Health reported that a company has already been hired to provide home care services, including physiotherapy, speech therapy and nutrition, among other specialties. According to the State, the Judiciary lacks the release of amounts to enable all necessary care. The Court of Justice of Rio Grande do Sul informed the reporter that home care was granted on June 9, 2026 and must be complied with. Also according to the TJRS, the State declared that it was able to offer the services through the contracted company, with the issue related to equipment remaining pending. The judge responsible for the case ordered the blocking of amounts to fund this structure and established that dehospitalization with the provision of home care by the State should have occurred by, at the latest, last Monday (20). However, Rhavi's family informed the report that they requested more time to resolve all pending issues in the process. The court also reported that there remains a disagreement regarding some prescribed medications, especially those that are not provided by the SUS. If these items are considered essential for hospital discharge, the family must present additional medical documentation for further judicial analysis. VIDEOS: Everything about RS