The family of seven-year-old Sara Bordas Barros in Northern Ireland is seeking help in the US as Sara is believed to be the first person in the region diagnosed with 4H Leukodystrophy POLR3B, a rare and incurable degenerative disease.
Sara’s parents, Agnes and Claudio, are navigating the challenges of the disease, attending physiotherapy, and dealing with the emotional impact.
They seek insights from a specialist in Amsterdam and hope for a clinical trial that could potentially delay the progression of the disease.
A fundraiser has been set up to support the family with medical and travel expenses.
