Young man with rare disease is discharged after 21 years living in hospital and will have his first Christmas at home in SC

After spending all of her 21 years of life in the same hospital in Jaraguá do Sul (SC), Thalita Valter de Carvalho was discharged and was able to go home for the first time. The young woman left the unit on October 30.

Diagnosed with spinal muscular atrophy (SMA) at three months of age - the fifth case recorded in Brazil, according to Jaraguá Hospital -, she was finally able to go home after the family prepared a fully adapted space to receive her.

😷 Spinal Muscular Atrophy is a rare neuromuscular disease, of genetic origin and characterized by progressive severe muscle weakness and decreased muscle tone and strength, resulting from the degeneration and loss of motor neurons in the spinal cord and brain stem nucleus.

Thalita's mother, Jeane de Carvalho, noticed changes in her daughter's development in the first months of her life. The main warning sign was the absence of movement in the baby's legs.

"When I saw her different, what caught my attention were her little legs. Her legs were straight and had no movement. And, in fact, no one believed me that she was different," he said.

By moving home, Jeane hopes to provide her daughter with new experiences. The main one is celebrating the first Christmas outside the hospital environment.

"What do I wish for her now, at the moment? The first Christmas. Do you understand? The first Christmas she didn't have. And I want to provide it", he said.

Thalita Valter de Carvalho, 21, was discharged and was able to go home for the first time — Photo: Fábio Fernandes/NSC TV

One of the first diagnoses in the country, according to the hospital

At the time Thalita was born, AME was still little known in the country, which made her diagnosis one of the first recorded in the country, according to the hospital.

Since being hospitalized for the first time, at three months old, the young woman had never returned home. The family was unable to afford the necessary structure for home treatment.

For more than two decades, the hospital was the family's true routine. Jeane says she only went home a few times a week for household chores, but spent most of her time at the hospital with her daughter.

"Being in the hospital was like it was our home too. In fact, it was more our home there than here, because I spent the most time there, every day, every Christmas, every holiday", he recalled.

Talita was diagnosed with the disease when she was 3 months old — Photo: Fábio Fernandes/NSC TV

Daughter's wishes motivated change

The decision to leave the hospital came from a conversation between mother and daughter. Jeane asked Thalita if she would like to live at home, and the young woman replied yes.

"When she said yes, I told my husband: I can't stay there anymore", said Jeane.

The family bought a new house, received donations and had the support of the hospital itself to prepare the property. One of the spaces was completely adapted to meet the young woman’s needs, with equipment and a controlled environment.

Despite being discharged, the family is still seeking in court the right to receive home care, with support from technicians, nurses and doctors.

Young man was discharged on October 30th — Photo: Fábio Fernandes/NSC TV

"We won"

Jeane was moved when recounting her daughter's first moments outside the hospital. Among the young woman's new experiences are feeling the heat of the sun and looking directly at the sky for the first time.

"Just the fact that yesterday, that we were here in the room and that she saw the sky, that she felt the sun on her... you know, everything is ok for me. We won, we won", he stated.