Mother of severely disabled child trapped at home for a year as authorities fail to provide care

A Lithuanian mother caring alone for her severely disabled son has been unable to leave her home for nearly a year due to a lack of state-provided support services, national broadcaster LRT reports.

Laima (name changed at her request), whose 12-year-old son has a rare genetic mutation causing treatment-resistant epilepsy and requires a tracheostomy to breathe, says she has been “literally trapped” in her Elektrėnai home since her previous caregiver could no longer assist after her son’s health deteriorated. “This is what my life looks like now. I don’t go anywhere,” she told LRT.

The boy’s condition worsened a year ago when a routine virus led to severe complications, leaving him intubated for three weeks. Doctors performed a tracheostomy—an opening in his neck with a tube to maintain his airway—but Laima says local authorities now refuse to provide a qualified nurse to manage it. “Only a trained caregiver can handle the tracheostomy if needed, but the municipality won’t assign one,” she said.

Without help, Laima provides round-the-clock care alone. “I have no life of my own. For 24 hours a day, I only take care of my son,” she said. Her health has deteriorated from years of unrelieved stress, and she has gone a full year without seeing a doctor. Brief errands—like grocery shopping—are only possible when her elderly mother temporarily watches her grandson, but even that support is limited by her mother’s own health issues.

Local officials have suggested placing the boy in an institution, which Laima rejects. “They said it would make things easier for everyone. But I worked so hard to bring him back after his crisis—he’s the same boy he was before, just with a tracheostomy,” she said. “I won’t give up on him.”

Elektrėnai Mayor Arvydas Vaitkus acknowledged the case to LRT, calling it a “known problem,” and pledged that Laima would receive the necessary services. Child welfare experts compare situations like hers to “legalized servitude,” noting that parents of severely disabled children often have no real choice but to provide constant care without state support.

Laima’s son first developed seizures at nine months old. After years of tests across multiple countries, German specialists finally identified a rare genetic mutation as the cause. “We’ve suffered so much. It’s been 12 and a half years of struggle,” she said. Secondary diagnoses have left the boy completely dependent on her, while Laima’s own physical and mental health continues to decline. “What happens if help never comes?” she asked.