A family in Saxon, Switzerland, is sharing their story as part of World Rare Disease Day, bringing attention to the challenges and triumphs of raising three children with the same rare syndrome.
Lina and Marco Amaral’s children, Liam, Lyana and Matias, all live with a condition that causes developmental delays. The couple spoke to La Nouvelle Liste about their experiences, describing each milestone as a moment to cherish.
“We live each progress as if it were Christmas,” Lina Amaral said.
The family’s story comes as awareness grows around rare diseases, with organizations like the University Hospital of Lausanne (CHUV) reporting a tenfold increase in adult patients with genetic conditions, according to 24 Heures. The increasing numbers highlight the need for continued research and support for those affected by these conditions.
World Rare Disease Day aims to raise visibility for the millions of people worldwide living with rare diseases, and to advocate for equitable access to treatment and care. The Amaral family’s openness about their journey serves as a powerful reminder of the strength and resilience found within families facing these challenges.
The story was also shared on Le Nouvelliste’s Facebook page.
