Pequenos Raros brings families together in Bahiana in celebration of Children's Month

With the Incredible Hulk painted on his arm, 6-year-old Davi enjoyed every moment of Pequenos Raros, an event held last Saturday (4) at the Cabula Campus. A resident of Santo Amaro, in Bahia's Recôncavo region, he participated in adapted and inclusive games, while his mother, Thaiane Ferreira, came to celebrate Children's Month and strengthen the support network among families living with challenging health conditions. "These moments are good for him and me. We meet other families going through similar situations and support each other," said Thaiane.

Pequenos Raros is an initiative of the International Study and Research Group in Medical Genetics (Epigem) and the Interdisciplinary Academic League of Genetics (Laige), with the support of the Bahian Association of Relatives and Friends of Mucopolysaccharidosis Patients (Abamps). The morning featured face painting, a ball pit, inflatable toys, and cooperative games, as well as a snack of crepes and cotton candy. There were also discussion groups for families from 10 municipalities and educational moments about diversity and valuing childhood.

For Luíza Cajado, president of Laige and an eighth-semester medical student, the initiative brings science and the community closer together: "We research genetics, but we also want to be close to the people who live these experiences every day." She commented that the playfulness of Pequenos Raros is supported by the League's ongoing work, which participates in conferences, promotes outreach activities, and expands the social impact of research.

Attorney Robson Guimarães Filho, a partner in the project, emphasized that access to high-cost medications still requires attention. "Even when treatment is covered by the SUS (Brazilian Unified Health System), it is often necessary to go to court to ensure that the right to health is respected," he explained. Márcia Oliveira, president of Abamps, reinforced the importance of the partnership with Bahiana: "The university offers a multidisciplinary team and specialists who make a difference in the daily lives of families. Today is a day of fun, but also of strengthening the fight. Creating this support network is essential for families facing the challenges of having a child with a rare health condition."