One in 20 million

Alexandra Peraut is a lively, intelligent child, quick for her age and able to communicate in several languages, however, this is not what makes her unique; Alexandra was born with Hutchinson-Gilford syndrome, commonly known as Progeria. This rare syndrome causes the body to age prematurely and makes Alexandra one in every 20 million children worldwide who suffer from this condition. The average life expectancy for children with this disease is 13 and there is currently no cure.

This month, in conjunction with TV3 Marató’s campaign to raise awareness of minority diseases, La Bústia newspaper has published an article about two children suffering from rare conditions living in northern Baix Llobregat, and an interview with Alexandra’s mother, Esther Martinez. In the article Mrs Martinez talks about Progeria, about Alexandra’s day-to-day life, and about the awareness and fund-raising work that is underway for the Alexandra Peraut Progeria Association, which is helping to pay for vital research.

Inspired by Alexandra’s situation, Agora International School Barcelona has organised a number of campaigns and talks to raise awareness about Progeria and to help to educate people about this rare and life-limiting condition. On 9 November, Agora International School Barcelona and Agora Sport Club organised our VI Charity Fun Run in support of the Progeria Research Foundation. We want to do all that we can to help to raise awareness and to try and beat the diseases affecting children like Alexandra.

 

Read La Bústia’s article about Progeria (in Catalan)

Read the interview with Alexandra’s mother, Esther Martinez, published in La Bústia (in Catalan)

Visit the webpage for the Alexandra Peraut Progeria Association

 

Picture: Xavi Josa