With rare genetic disease, child needs R$10,000 for treatment

Diagnosed with adrenoleukodystrophy in 2022, Isaac Brunno Araújo, 11 years old, faces a rare and degenerative genetic disease that affects the central nervous system. About one in 20,000 people have the condition, whose symptoms include cognitive deterioration, loss of vision and hearing, and motor problems. It can eventually lead to disability and premature death.

Born in Santa Maria, Isaac Brunno needs to undergo a regenerative treatment known as Reac. However, the procedure, divided into cycles, is only performed in Italy. The boy went through the first two sessions, which cost R$80,000 and R$70,000.

Now, to go through the third of the four cycles recommended by the child’s doctor, his family is trying to raise R$10,000, the amount needed to complete the R$65,000 corresponding to the cost of the session.

isaac bruno

Isaac Brunno before the most severe manifestation of the disease
Personal archive

isaac bruno 2

The child’s family tries to obtain resources for the boy’s treatment
Personal archive

To go back
To progress

0

Isaac’s mother, teacher Jaqueline Araújo Silva, 38, says that the family started campaigns in an attempt to raise funds, distributing leaflets, holding raffles, putting up banners and publishing posts on social media.

“The Reac treatment is the hope of stopping the progression of the disease and for Isaac to recover the functions he lost”, reports the mother, who trusts in her son’s improvement and, through social media, emphasizes in posts that “diagnosis is not destiny”.

Diagnosis

Isaac Brunno was diagnosed in April 2022, after much insistence from Jaqueline in wanting to know what was wrong with her son. The child’s first symptoms involved changes in behavior, until then considered normal by experts.

“But he started having difficulty playing with other children, he got nervous, he cried. I took him to a psychologist, a speech therapist, a neurologist. And everyone said Isaac’s behavior was normal”, recalls the mother.

With Jaqueline’s persistence in finding out why her son wasn’t well, the neurologist ordered an MRI of the skull, an exam that revealed the disease.

Over time, Isaac Brunno lost his vision, stopped talking, walking, swallowing and began having several seizures. Before starting Reac, the child was frequently hospitalized and had crises that lasted up to 12 hours.

After two cycles of treatment, the boy began to see again and the symptoms caused by the disease were alleviated. “What I celebrate most is that my vision has returned and the crises have stopped. The doctors who accompanied Isaac here in Brazil said that the crises would only increase [sem o tratamento]as the disease is progressive and degenerative”, recalls Jaqueline.

The family is racing against time to raise the money before leaving for Italy, next Saturday (4/5). The teacher adds that the goal of R$65,000 corresponds to an emergency amount, as the boy also needs resources to pay for an adapted chair, the parapodium, and cannabidiol-based medications.

Anyone wishing to help Isaac Brunno can contact the family by calling 61 983-204-954, the same number as the boy’s mother’s Pix. You can also access the campaign link started by Instagram.