Brothers from Acre who have an ultra-rare disease live with games and an adapted routine Football, running and games that require physical effort are left behind in the routine of Pedro Rodrigues, 12 years old. Residents of Rio Branco, he and his younger brother, Tiago Rodrigues, 7, live with Girdle Muscular Dystrophy type 2C (LGMD2C), an ultra-rare genetic disease that causes the progressive loss of muscle strength and thus, they had to adapt their routine. Before the disease advanced, the two had a life similar to that of any child. They learned to walk, run and play normally. However, over the years, simple movements began to require more effort and the family had to adapt. ? Join the g1 AC channel on WhatsApp According to lawyer Fabíula Albuquerque Fleming, mother of the boys, running, cycling and playing more lively games with his friends stopped being part of Pedro's routine a few years ago. "Getting up from the floor, getting into a higher car, sitting in a lower chair and running doesn't happen anymore either. These are activities that Pedro can no longer do in the same way that Tiago still can", said his mother. Pedro, aged 12, and Tiago, aged 7, live with an ultra-rare genetic disease in Rio Branco Reproduction/Instagram READ MORE: Rare genetic syndrome causes 2-year-old child from Acre to have insatiable hunger 'It's been desperate', says mother of autistic boy diagnosed with rare syndrome that causes paralysis inside AC 'She was a loved and happy girl', says mother of child with rare disease who died after respiratory syndrome in AC ?Dystrophy Girdle Muscle type 2C is a genetic, degenerative disease with no definitive cure. It mainly affects the muscles of the shoulders, arms, hips and legs, causing a progressive loss of muscle strength throughout life. Among the limitations in daily life, Tiago is the one who feels the impacts least, as he is younger, he can still run, climb stairs and accompany his colleagues in many activities, but, according to his family, he already shows signs similar to those that appeared in Pedro years ago. Pedro was the first to receive the diagnosis of the disease. Since then, the family began to monitor the condition's evolution and, later, discovered that Tiago had also inherited the same genetic condition. Their treatment includes specialized physical therapy and monitoring of respiratory function. In addition to periodic consultations outside the state, the brothers undergo specialized physiotherapy three times a week in Rio Branco, following protocols defined by the doctors who accompany them in São Paulo. At school, the two brothers also receive special support. Fabíula says that the pedagogical team sought to adapt the routine without compromising the children's autonomy. With Tiago, a teacher monitors the activities more closely. Pedro now receives attention from the entire school team. To avoid accidents during recess, for example, he leaves a few minutes before his classmates for lunch, avoiding the rush in the courtyard. Employees also remain vigilant to prevent falls. Rare genetic disease causes brothers to progressively lose movement in Acre Adaptations In addition to limitations in playing, even simple day-to-day tasks now require adaptations. Getting up from the floor, getting into a taller car or sitting on low chairs are movements that require effort and support. According to pediatric neurologist Bruna Beiruth, the disease belongs to the group of neuromuscular diseases and is inherited when the child receives the genetic alteration from both the father and the mother. "The child is born and develops normally, learning to walk, run and play like any other. Over the years, however, they begin to lose these skills because the muscles gradually stop responding to commands", explained the specialist. Inside the house, the games needed to change. Electronic games, calmer activities and family time began to take the place of part of the physical activities in Pedro's routine. Family participates in an online fundraising campaign for an experimental treatment in the United States Personal archive Tiago's reality is still different. At 7 years old, he continues to run, climb stairs and participate in games with other children. However, the family is already noticing signs of loss of muscle strength. "He [Tiago] runs slower, he doesn't have the same strength as a child his age. To get up from the ground he needs support, making that movement of putting his hand on his own leg. He already has difficulties that other children of the same age don't have", explained his mother Fabíula. As the disease progresses, simple activities begin to require more and more effort and support from parents. In more advanced stages, LGMD2C can also compromise muscles responsible for breathing and heart function. Intense routine at home and at school Currently, the family's routine revolves around caring for the two brothers. They follow up with doctors in Acre and also with specialists in São Paulo, a reference in the treatment of the disease. According to Fabíula, the teams maintain frequent contact to discuss the boys' progress and align medical procedures. "Whenever necessary, the doctors here talk to the specialists in São Paulo. We carry out this joint monitoring", he explained. In addition to periodic consultations outside the state, the brothers undergo specialized physiotherapy three times a week in Rio Branco, following protocols defined by the doctors who accompany them in São Paulo. Pedro and Tiago undergo physiotherapy to preserve mobility and slow the progression of the disease Personal archive Hope For eight years, the family heard from doctors that there was no treatment capable of stopping the progression of the disease. However, hope changed last year, when the neurologist who accompanies Pedro and Tiago in São Paulo was