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A 10-year-old boy with Dravet Syndrome inspired a law in SC. The legislation creates a week of awareness for the rare disease in the state.
A journey marked by seizures, hospitalizations, and a search for diagnosis resulted in the creation of a state law in Santa Catarina. Law No. 19,759, sanctioned in March this year by Governor Jorginho Mello, was inspired by the story of Davi Guielov da Silva, a 10-year-old resident of Penha, in the state’s North Coast.
The legislation establishes the State Week of Awareness for Dravet Syndrome — a rare, incurable, and difficult-to-control disease — and aims to expand knowledge about the condition, encourage early diagnoses, and guide affected families.
The diagnosis that changed everything
Davi was born in March 2016, after an uncomplicated pregnancy. Everything seemed fine until he was four months old, when, during a bath on a cold winter day, he had his first seizure. The shock was immediate and the despair, inevitable.
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“We called the firefighters and found out it was a seizure. We were desperate, we thought he wouldn’t regain movement,” recalls his mother, Anelise.
Two days later, another seizure — this time more prolonged — was only controlled in the hospital with intravenous medication. From then on, the family began a sequence of hospitalizations and recurring episodes, all without a clear diagnosis.
The confirmation of Dravet Syndrome came only after a series of tests, including genetic sequencing performed in Joinville, in the North of Santa Catarina. It is a rare epileptic encephalopathy — a severe form of epilepsy of genetic origin —, which has no cure and is difficult to control with medication.
With the diagnosis in hand, the family routine had to be completely reorganized. The treatment required continuous use of medication, specific emergency protocols, and permanent monitoring.
At times, the parents would sleep dressed and kept a bag ready for urgent trips. “When we received the diagnosis, we cried a lot. But we understood that we needed to fight for him,” says Anelise.
The life of the boy Davi today: crises, overcoming, and routine
After starting treatment with targeted medications, the boy’s health began to improve positively. The seizures became less intense and shorter, also allowing progress in his development.
Even so, as it is an unstable syndrome, medical follow-up needs to be constant and with frequent adjustments — currently, Davi still has, on average, two episodes per week.
Besides the seizures, the condition interferes with cognitive development and behavior, with variations that tend to intensify after more prolonged episodes. Despite these challenges, the boy continues to participate in typical childhood activities.
With the simplicity characteristic of ten-year-olds, Davi describes his own story naturally: “I am fine. I have Dravet Syndrome, I take four little medicines. I like to play ball, paint, and do puzzles.”
What the legislation provides
Law No. 19,759 establishes that the State Week of Awareness for Dravet Syndrome will be held annually in the week of March 22 — a date chosen in honor of Davi’s birthday. The date is officially part of the calendar of the state of Santa Catarina.
In addition to marking the awareness period, the legislation provides for concrete actions in state schools. Among the established measures are:
- Lectures on Dravet Syndrome for students and the school community
- Distribution of informational materials about the disease
- Pedagogical activities aimed at awareness and support
- Encouragement of early diagnosis and guidance for affected families
The creation of the law represents, for Davi’s parents, much more than recognition. It is the transformation of ten years of suffering into something capable of helping other families who are still facing the same path without knowing where to go.
The father, Jonatas, summarizes what the achievement means: “It was 10 years of struggle. At first, we didn’t want to expose, but we understood it was necessary. This visibility can help other families find a way.”
Therefore, what started as a private story of a family from Penha now has statewide reach — and can contribute to other cases of Dravet Syndrome being identified and treated more quickly.
With information from ND+
