Today, social networks are perhaps the most important means of communication. But in addition to keeping us informed about what is happening in the world, they also have a positive side: the ability to bring people together to support certain causes, as has happened with some babies and children who suffer from serious illnesses and require some support or seek a donor.
Now, we share a wonderful case that has taken place in Portugal, where its inhabitants joined in a beautiful show of generosity and solidarity, raising two million euros for Matilde, a baby whose medical condition requires "the most expensive medicine in the world."
Matilde's story
Matilde is a baby who will barely turn three months of being born, and yet she is already known internationally. When she was one month and two weeks old, she was diagnosed with Spinal Muscular Atrophy (SMA) type 1, also called Werdnig Hoffmann disease, and is the most severe type of spinal muscular atrophy and one of the first genetic causes of infant mortality.
In Babies and more Solidarity record: almost five thousand donors registered to save the life of a child with leukemiaMatilde began treatment with therapies to improve her motor and respiratory function, and with it, increase her chances of survival. Fortunately, there is a medication in the United States specifically to treat the type of SMA that Matilde suffers and is more effective in helping you survive, however, also It is known as "the most expensive medicine in the world", because its cost is very high: two million euros.
His parents, of course, are determined to save Matilde's life, so they went to social networks, where they created a Facebook page to tell the story of Matilde and find a way to raise as much money as possible to buy the medicine.
The union of an entire country
Matilde's story did not go unnoticed and moved the whole country, causing a great wave of solidarity in Portugal, where even some important characters like the cyclist Rui Costa, who was world champion in 2013, organized activities to help parents reach the goal. And Portugal did not leave Matilde alone.
In less than two months of having started the search to raise the necessary money, Matilde's parents recently announced that thanks to everyone's support, they managed to reach and even exceed the amount needed to buy the medicine:
Hello my dear ones,
I wanted to tell you that during the morning the parents met with the doctors and as I am already better, today I go to the infirmary.
We want to thank once more and we will thank again and again, for having walked with us side by side, for his enormous heart, for the current they created for our cause. There are still no words in the dictionary that define everything they have done for us, we have to invent a new word.
We have reached the goal of the value of the drug, we will probably have additional expenses. We are waiting for protocol responses and for Matilde's health to improve, so that we can move forward with the next steps.
To all the people who organized and organized the solidarity events for our cause, we leave at your discretion what to do next.
The amount that is not used in Matilde's treatment will be donated to families with other "Matildes".
The medicine, called Onasemnogene abeparvovec and marketed under the name of Zolgensma, is a genetic therapy that is administered intravenously and is indicated only for children under two years. With him, it is expected that little Matilde can survive and have a better quality of life, greatly improving the problems caused by her illness.
