Access to medicines leads to 17 lawsuits per day in the state of SP Baby Heloise, aged one year and ten months, from Indaiatuba (SP), completes this Wednesday (15) a month without an imported medicine that guarantees her only safe source of energy. Valued at R$100,000 and provided by the Unified Health System (SUS), the medicine is essential to treat the rare VLCAD syndrome. ? VLCAD is a rare metabolic error that affects the body's ability to digest fats. People with this condition need to adopt a restricted diet and are subject to hypoglycemia attacks, muscle weakness and heart problems. The high-cost medication Dojolvi (Tri-heptanoin), produced in Germany, is Heloise's only safe source of energy. Treatment is guaranteed by court order, but the federal government did not send the new shipment to the family. In a statement, the Ministry of Health reported that the medicine is out of stock. As a result, a judicial deposit was authorized for the purchase, which, according to the Union, may be made at any time in compliance with the Court's decision. Indispensable Baby with rare disease completes a month without medicine worth R$ 100 thousand that was not delivered by SUS Reproduction/EPTV Thialle and Vinicius Rebelo, Heloise's parents, said that the medicine is essential to guarantee the functioning of the organs throughout life. "Without it, the fear is doubled. We already live in fear even with the medicine, but without it anything can be fatal", said the mother. "It's a feeling of impotence. If it were a medicine that was a little more accessible, we would do everything we can, but we're talking about R$100,000. Who has access to that today? It's very difficult. And now, where do I go, what do I do?", said Thialle. The family won the right to the medicine in court in February 2025, but the first shipment only arrived in December of the same year after a judicial deposit was made into a judge's account, who released the amount for the purchase. To maintain the supply every six months, parents need to send updated medical reports, since, as a baby, Heloise grows quickly and the dose of the medicine is constantly increasing. This time, however, there was a delay in release. According to the family, the Union informed that it will make the new deposit, but did not set a deadline. The procedure will still depend on importation, international dispatch, arrival in Brazil, release by the National Health Surveillance Agency (Anvisa) and delivery to the city's high-cost pharmacy. "Last year, when they said they were going to make the judicial deposit, it took 10 months for this medication to arrive. When will we receive it? We have no deadline. She has no deadline to go without medication. It's an extremely worrying case," said the father. Eldest daughter was a victim of the disease The parents' fear is worsened by a recent trauma: in 2023, Thialle and Vinicius lost Antonela, their eldest daughter, just four months old, due to the same disease. The baby suffered three cardiac arrests before receiving the diagnosis. "The disease destroyed all of her [Antonela's] organs. It enlarged her heart, enlarged her liver. I know what this disease can cause. Thank God we have the medication, but unfortunately at the moment we don't have access to it," said Thialle. "We've already felt firsthand what the lack of medication can cause. These are extremely serious consequences. We are in a very tense moment and very afraid of what is to come", said Vinicius. Change in routine ? Heloise does not consume foods that are a source of fat, such as meat. According to her mother, she can normally eat fruits, vegetables and other fat-free items. The baby feeds exclusively through a gastrostomy tube (GTT) implanted in the abdomen. "She does not absorb fat, so she cannot have this source of energy that we, who have nothing, can. So, it only has the first source, which is glucose. This medicine replaces this fat that she cannot absorb", said the mother. With the interruption in treatment, the family was forced to intensify daily care to keep the baby safe: Night feeding: the interval between diets was reduced from six to three hours, which forces parents to wake the baby up in the early hours of the morning to feed her. Social isolation: the girl lives isolated in a "bubble" at home to avoid contagion from viruses or colds, as any illness increases the body's energy expenditure and increases the risk of immediate hospitalization. "The risk now is if she catches a virus or cold, it could get worse. She has already had a change in her heart and, as she does not have this fat reserve, it can cause hypotonia. The risk of her having a metabolic crisis without this medicine is very high", concluded Vinicius. High-cost medication Dojolvi (Tri-heptanoin), produced in Germany Reproduction/EPTV VIDEOS: Everything about Campinas and the region