The court grants home care to a twin with a rare disease two months after his sibling

The Court of Justice of the Federal District and Territories (TJDFT) granted home care to twins Alan Arrajo de Lima in a decision published on Thursday (11/13), two months after his brother Arthur Arajo de Lima won the right. The boys, now 14, were born with a rare and fatal degenerative disease and need ongoing home care to survive with less pain and a better quality of life.

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The brothers live in the family home in Planaltina (DF) and have been denied home care by the Health Service of the Federal District (SES-DF). The court had initially granted treatment to Alan only, in September 2025, as the proceedings were taking place separately in court. The decision was issued by the 5th Public Finance and Public Health Court of DF.

Upon seeing the new sentence, the twins’ mother, Ana Lisa Fonseca de Lima, 34, cried with happiness. “I was very worried. Because the way I want one of them to be treated, I want the other to be treated too. They are twins and they have a very strong relationship. Everything should be the same for them, with equal rights. I looked at the process every day. I looked at it in the afternoon and early in the morning. When I saw the movement, I went in calmly. I started crying, and the penny dropped. They will both get the care they deserve and have the right to a good quality of life. It’s an early birthday present,” she said.

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Alan and Arthur were born with Batten disease. It is a progressive and incurable condition. Without movement, young muscles atrophy. Patients suffer from severe pain. Therefore, complete home treatment, with physical therapy and medications is vital for young patients. Under the ruling signed by Judge Henaldo Silva Moreira, the trust must begin providing home care for Arthur within 30 days. It’s the same judge who ordered Alan’s treatment.

According to Anna, Alan’s health improved greatly after starting home care. “He was in a lot of pain. Because they weren’t talking, we didn’t know where it was coming from,” she commented. “After the multidisciplinary home care team started treating him, the pain went down a lot. They changed his diet, adjusted his medications. He does physical therapy every day. He does it from Sunday to Sunday. I feel good that he is receiving care and having a good quality of life.”

From the point of view of the twins’ mother, after a long legal battle, the judiciary accomplished its mission to guarantee rights. He pointed out, “This phrase is trite but very true: justice takes time but it never fails. I am very grateful to the judge. He played his role and ensured that justice was done.” According to the judge, the DF “has a legal duty to provide the plaintiff with the medical care he needs, and to ensure his care through the services provided directly or indirectly by the Unified Health System (SUS).

precedent

For Anna, the Ministry of Health needs to change the protocol for receiving patients. He criticized: “The trust should act with more compassion towards patients. The programs are there on paper, but they do not reach the patients who need them most. It is very inhumane. It is disgusting. They do not put themselves in the patients’ shoes.” According to the young men’s mother, Alan and Arthur’s case set a legal precedent for other families to access home care through a system of support consolidated through the courts.

The new sentence is the fulfillment of a dream for Anna. She said: “As an atypical mother, what I always dream for Alan and Arthur is that they do not suffer in any way and are always comfortable. This way, they will be happy while they are with me. I want dignified care with quality of life, without suffering or pain. Atypical mothers should never give up pursuing what they need for their children. Even if everything is against them. Never stop chasing them. God is watching. God is slow but never fails.”