The journalist Isabel Gemio has presented today at the National Library of Spain "My son, my teacher", a tribute to his first-born, Gustavo, who suffers from muscular dystrophy, a book in which he also denounces the lack of scientific research in rare diseases, more than 7,000 worldwide.
Gemio (Alburquerque, Badajoz, 1961) has defined "My son, my teacher", accompanied by his children Gustavo and Diego, as "the testimony of a mother who has taken advantage of the privilege of being able to reach many more people than many other mothers and mothers. many other parents try and fail. "
Edited by La Esfera de Los Libros, the volume narrates the experiences of the journalist, already "without purists", and also collects interviews with health professionals and testimonies of more people who have relatives with rare diseases.
"Of the 18,000 diseases that exist, 7,000 and are minority diseases, of these we call rare, that is, almost half, and yet these patients are invisible to society, but they exist," said Gemio.
When she was five months pregnant with her second child, Diego, they told Gemio that her first-born, almost two years old, had been diagnosed with muscular dystrophy.
"I have written a book from the heart, I have not wanted to make a dramatic book, I have not sweetened reality either, I have told it as it is," the journalist pointed out, adding that reality is more difficult to "radiograph".
"The reality," he continued, "is that mothers who have a child with an incurable disease would like to shout and tell the world that we are desperate, that seeing our children suffer is unbearable." We do not understand why research is not an issue State of first order ".
The budget to investigate is "simply ridiculous" and "it seems that almost nobody cares," Gemio denounced.
"We do not understand why there are means to cure our children, money is spent on things that are not as important as health and life, we do not understand it", he added, and has asserted that Spain "is very far from the Union European "in research.
Gemio, who has thanked his son Gustavo, his "hero", his consent to launch this book, has pointed out that it is "urgent" that society knows the reality of millions of people, and regretted that "there are so many things pending" .
"There are mothers who dedicate themselves body and soul to be caretakers of their children, who go into depression, who meditate, who have to give up their life, their work, to take care of their children," said Gemio, who said has regretted that the aid is minimal and depends on each Community.
The journalist Ana Pastor and the psychologist María Jesús Alava Reyes have accompanied Gemio in this presentation of "My son, my teacher", which is published coinciding with the tenth anniversary of the creation by the author of the Foundation that bears his name and that is dedicated to the investigation of muscular dystrophies and other infrequent diseases.
According to the editorial in a press release, part of the rights in this book are destined to the Isabel Gemio Foundation to continue with its research work.
Pepi Cardenete Cuenca