Two rather extraordinary Portuguese children flew to Boston last week to take part in a pioneering clinical trial to try and slowdown the devastating effects of Progeria.
Known as the premature-ageing syndrome, Progeria is believed to affect around 300 children worldwide.
In Portugal, this means Cláudia Amaral from Viseu, 16, and João from Portalegre, aged 11. The pair are among 40 children to be tested with a new treatment designed to add years to their lives.
In Cláudia’s case, she has already outlived the average lifespan for a child with her disorder. As the Progeria Research Foundation explains, most children die at the age of 13 – invariably from heart disease – but despite looking exceptionally frail and old, “inside they are just like other children”.
Cláudia attends normal school in Viseu, where schoolmate Clara Gouveia often carries her around on her hip, reports Rádio Renascença.
Cláudia’s mother told the station that her daughter’s symptoms were only diagnosed when she was four. “Loss of hair, loss of weight, changes to the skin, arthritis, bone loss, cholesterol, limited growth”.
