Saturday , May 28 2022

Margaux, the 5-year-old daughter forced to live in a great deal by European research



Margaux, today is smiling and littens to her four year old, has two birthdays. One is September 20, 2013, when his mother Marijke was born in Belgium. The second is September 5, 2014, the day when researchers from Telethon and San Raffaele in Milan investigated why they were always sick until they were upset, making them be treated with state -of-the-art gene therapy developed by European funds. for research.

The story of 'little Margaux' moved the audience today in Brussels in # 39; a plenary room of the European Parliament where the president Antonio Tajani gave the floor to the parents of the girl Luigi Naldini, director of the Teletonstitute for Genetheary (Tiget), as part of the high level conference & # 39; EU research and innovation in our daily life, organized by the Euratom in & # 39; with the EU administration.

Margaux had a definition of the adenosine-deaminase enzyme (Ada), a rare immune vision that contains the immune system to make it impossible to get rid of all bacterial threats, causing criminals to lose an isolated life in a sterile environment life. Therefore, the small patients call the sound of the sound.

"In just five weeks of life, Margaux had his first crisis – said Hein Moreels in Brussels – After a night in the hospital, the toddler sent home to us that he had nothing, after a week there was a new short sale of hospitals and then After two months the other, this time in week, which was treated under antibiotics. Some pediatricians said, "It has nothing to comprehend," others repeat, "It's healthy." They sent her home again. "

Then, at New Year's Day 2014, comes the most serious crisis. "He was three months old and he was very weak, he could not breathe," he called his father. Margaux is included in the university hospital of Leuven, a city east of Brussels. First, their parents get the good diagnosis: they teach Ada. But the wrong news is not over. In short, it is understood that a stem cell transplant has a lot of success and Margaux's little brother is not a compatible giver.

Hein Moreels and his wife Marijke Geens were in touch with Alessandro Aiuti, a researcher of Telethon Foundation and Medical Researcher of # 39; San Raffaele in Milan: One way to keep Margaux and is a state-of-the-art gene therapy at San Raffaele.

When the head starts out, September 5, 2014. "The second birthday of Margaux, his resignation, said his father to the EU Parliament, reporting how Christmas last year was the first time they could celebrate Belgium After the first three months of the therapy cycle, in 2015, things were improved until, in May 2016, the baby was adequately enough to heal after kindergarten and to learn, nowadays there is nothing that his parents are concerned about Margaux has got.

To use the words of Professor Luigi Naldini, Margaux "is the story of a dream of a new medicine that has been true." His genes – the doctor declared – were taken, corrected and re-established. functional blood cells, its first one of the first treatments that has been successful After its genetic testing, the test has been set up in the world, with more than 100 patients only in Milan. of the universe would be impossible without a European grant: the EU believed in our scientists' projects so that treatment was the first instance of gene therapy in the world It was a challenge that indicated the power of science indicated as the network.

The case of Margaux is one of the greatest successes of European investments in research and innovation. "Without innovation and research we do not want to grow up, we are not competing, our citizens are not guaranteed the best way", stressed the President of the European Parliament, Antonio Tajani, on the report "200 million euro since 1984 are invested ". More than 45 thousand researchers are involved in the European Horizon 2020 program, which have found more than 18,000 projects. The Commission has proposed to increase the budget of the program called "Horizon Europe" in future, but according to Tajani, it is not enough: "The proposal of the Parliament is to increase funds from # 39 The current $ 80 billion to $ 120 billion is a trust in the need for a political budget that denies citizens' priorities, while Europe has the courage to return to political leadership, it will also have the courage to invest more in the critical sector to be back as a protagonist in the world, but also to improve the viability of 'half-million Europeans' protection.

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