New Book: Life With An Angel

“What is Angelman Syndrome?” That is usually the first question we ask the doctor as soon as our child is diagnosed with this rare disease. The following questions may be of the kind: What can we do? Is there a treatment? What is their life expectancy?

As soon as we become aware of the fact that there is no treatment or cure, our whole life is turned upside down. Each individual family deals with the situation the best way they can. Some choose denial. However, sooner or later, they will try to contact other families in the same situation who will be able to understand, to share their own experience and offer support in bad times and celebrate with us the, good times.

All Angel families would have loved to hear about the syndrome from a more positive and closer point of view than that offered by doctors.

And so 25 families belonging to the Spanish Angelman Syndrome Association decided to write down their personal stories in the hope of spreading the word on Angelman Syndrome and especially with the determination to help those who in the future will come face to face with this diagnose.

We want them to know that they are not alone and that there is a life and hope beyond the syndrome. It may be difficult at times, but it will bring moments of total happiness, more than we could have imagined.

And, most importantly, the book is a tribute to our sons and daughters: it is their lives and their stories we are sharing with the world, a story they aren’t able to explain with words.

*The English version will be published soon.

Se trata de un libro escrito por 25 familias de la Asociación contando sus propias experiencias con un Angelman. Un libro imprescindible para comprender los que diariamente las familias viven.

Hemos analizado los precios de envio al extranjero, y sale sobre 10€ cada libro. El que este interasado en que le enviemos un libro al extranjero, debera pagarlo con tarjeta y a 20€ con gastos de envio incluidos.

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