He came into the world with a rare craniofacial malformation, called severe occipital encephalocele (Photo: Disclosure, Personal Archive)
Joaquim is only 7 years old, but he has a story that defies all medical prognoses. Still during the pregnancy, professionals warned the mother, Tyane Mattos, that the baby would not be compatible with life and that the pregnancy would be unlikely to come to an end. Against all predictions, Joaquim was born and since then he has been fighting a daily battle to live. The family lives in Concórdia, in the west of Santa Catarina.
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He was born with a rare craniofacial malformation called severe occipital encephalocele, as well as permanent blindness, hypotonia and hydrocephalus. Since he was a baby, he has undergone various treatments and therapies. Even with important limitations, he surprised everyone: he communicated, showed constant joy, loved music, had control of his body and was able to walk independently with assistance and, later, with a walker.
— Joaquim is our miracle. All the doctors said he wouldn’t survive even an hour, they said the pregnancy wouldn’t reach the end and he was born and for seven years he’s been developing and improving every day, like a true miracle — says his mother.
In October 2024, however, the family’s life changed drastically. Joaquim suffered severe intracranial pressure caused by cerebral valve failure. There were several emergency surgeries, two months in the ICU, as well as severe complications such as infections, meningitis, encephalitis and seizures. He survived, but returned home with serious sequelae, including cerebral palsy, difficulty speaking and swallowing, and spastic tetraparesis.
Currently, Joaquim’s greatest suffering is intense and constant pain. Severe spasticity caused a severe dislocation in the left hip, which no longer responds to medications. According to his family, he feels pain every day, even when taking strong medication.
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Given the severity of the condition, the only alternative to alleviate Joaquim’s pain is urgent bilateral hip surgery. Due to the complex clinical history, the procedure needs to be carried out at AACD, in São Paulo, a national reference in the care of patients with physical disabilities and intensive rehabilitation.
The total cost of treatment is R$190,000, which includes hospital, medical fees and rehabilitation. In addition, the family will have extra expenses with tickets, accommodation and food, as their stay in São Paulo should last between 30 and 40 days.
— Every day of waiting is another day of pain for my son — reports the mother, who created a solidarity fundraising to try to make the surgery possible as soon as possible.
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