Young man with rare disease runs the risk of dying in his sleep if he doesn’t get a device that costs R$50,000: ‘You could stop breathing’ | Tocantins

Young Geovana Vitória Dourado, aged 18, has been living in a hospital bed for two months with an illness that causes respiratory failure. She is from Araguaína, in the north of Tocantins, and needs a device that costs more than R$50,000 to survive. Without this equipment, she is at serious risk of dying in her sleep and cannot leave the hospital.

Sandra Darc de Souza Aguiar Dourado, 42 years old, mother of Geh, as she is affectionately called by the family, said that the young woman has suffered from the symptoms of so-called myasthenia gravis since she was four years old. Lethycia Dourado, 25 years old, has also been following her sister’s situation since the diagnosis.

The disease is autoimmune and according to the Clinical Protocols and Therapeutic Guidelines (PCDT) of the Ministry of Health (MS), its characteristic is muscle weakness, which worsens the person’s health status throughout the day. Myasthenic crises are characterized by respiratory failure, as in Geovana’s case.

According to Lethycia, as the diaphragm is affected by the disease, if her sister was left without a respirator she could die suddenly during the night. “She is a miracle from God. If she doesn’t use the device, she could stop breathing and die without even seeing it,” she said, distressed.

Since January this year, Geovana and her mother have been in a hospital in Brasília, because, according to the family, there was no treatment for the condition in Araguaína. Visits to the federal capital have been taking place since the disease was diagnosed, still in childhood.

“Over the years, I kept coming with her for follow-up care in Brasília, because there wasn’t much to do. The medicine for myasthenia didn’t work. Others were tried and didn’t work out very well. At the time of the pandemic, I missed her appointment in Brasília. But in January 2024 I managed to return here, because she was getting serious [o estado de saúde] and there was no adequate hospital or specialists to take care of her in Araguaína”, said the mother.

Young man from Araguaína faces treatment against autoimmune disease that makes breathing difficult

As she was unable to leave the hospital, the young woman turned 18 in hospital on March 9th. A little party was improvised so that the date would not pass without celebration. According to her sister, even with such a serious situation, Geovana does not complain.

“She always says she’s fine, even though we know she’s not, her faith in God is unparalleled. The doctors say several things and she doesn’t accept them, because she said she has promises from God and she won’t die”, explained Lethycia.

Since the beginning of her hospitalization in Brasília, Geovana has faced problems that further complicate her fragile health condition. To feed she needs to use a tube and at first, it was done through the nose. But when they changed the tube to gastric, in the stomach, ulcers appeared.

“It didn’t work out very well. She had an infection and went through a very delicate moment with a lot of pain. Only now has she improved from that pain. And the doctors have to keep her here in the hospital due to her respiratory failure”, said Sandra.

In order for the young woman to be able to breathe better and more comfortably, the family needs to buy a device called Bbap, which costs more than R$50,000. To obtain the value, it is running a campaign through social media.

“I can only discharge her after purchasing this device, which is called life support. It has different values, but what she needs is for those with already severe insufficiency. And the least we found costs R$52 thousand”, said the mother.

Meanwhile, the mother is also trying to get help from the public authorities in Brasília to access life support equipment. Currently, Geovana is unable to stay off the respirator for long, as she is tired. The family does not lose hope of achieving quality of life for the young woman.

“It’s not easy at all, but I have been firm in God. When she was a baby, I took care of her so my mother could work, that was until she was diagnosed with the disease, so I have a mother’s love for her, we have always been very united. I have never seen anyone have a heart as humble and good as hers, so seeing her in this situation hurts a lot, if I could I would give all my strength, I would give my life for her, but God knows all things, and I trust him that everything will be fine”, said Lethycia.