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CASTELFRANCO – Nicolò Martin has become one of the symbols of the year that has just ended, a model of resilience for 9 months. It moved an entire region, the Veneto starting with citizens, families, children, schools, municipalities and even the governor himself Luca zaia who together with the councilor Manuela Lanzarote gave Nicolò the most beautiful gift of all, a drug. In fact, the drug. The only one discovered so far in the US capable of giving a life expectancy against SMA 1, spinal muscular atrophy, a rare and degenerative disease that attacks motor neurons with consequences throughout the body. The Region has decided to bear the full cost of purchasing the most expensive medicine in the world., Zolgensma, the only one capable of reactivating the reproduction of motor neurons at a cost of approximately 2 million and 100 thousand euros. Nicolò’s father, Mattia Martin, is moved. For their baby, but also for all those parents who are fighting a battle bigger than them. The appeal and the hope now is that a path can also be opened for them. Papa Mattia and Mama Giorgia are in seventh heaven.
THE GOOD NEWS
“We really weren’t expecting it,” Mattia admits. It was a Christmas present that came a little late, but it was what we expected to find under the tree. The only way to really help Nicolò was this and I am very grateful to the Region but also to the City Council of Castelfranco and all those who helped us. I told the doctors that I would stay still in a chair or bed instead of Nicolò. He is my first thought when I wake up and my last when I fall asleep. When I see him happy, I am happy too, I live for him ». On December 29, the phone call that marked the turning point for the Martin family. “It was the Hospice of Padua that follows Nicolò on his journey, explains Mattia Martin. She called the manager and told us that she had been contacted by the Region that she had decided to buy the drug for Nicolò. It was a crescendo of happiness, irrepressible news, truly wonderful.
SOLIDARITY
In the last month, Nicolò has been enveloped by the affection of almost 8 thousand people of all ages who have donated more than 270 thousand euros to help the family buy the American drug through a fundraiser activated by his father on the Gofundme platform. Campaign that will remain open with the reduced goal of 500 thousand euros and all donations will go to the account in Nicolò’s name to support him on his future path. “Besides drugs, Nicolò will need constant help. It’s not that once you’ve taken the drug you feel better right away, the road is still long, explains his father. The donated money is all left, as well as those that will be donated in the future. The amount raised is an important figure that brought us closer to the goal but was still a long way off. We are glad that the Region has intervened and we appreciate all the love received. If the figure had been higher, the idea was to open an association to help other children affected by SMA 1, but that money will go to Nicolò anyway ”. Thanks to the fundraising, Nicolò’s situation has entered the hearts of many and has reached the Region.
THE HOPE
“If I hadn’t made the appeal, no one would have come to meet me and maybe the Region would never have known about it,” says Martin. Now that the Region knows, I hope it can help other children with SMA1. Previously there was talk of a deadly disease, but now there is the possibility of a cure that is not yet available in Italy and is very expensive for which the help of others is needed. I hope that what happened to us can also open the doors to other Regions to help children with SMA1 like little Melissa from Puglia and others like her and Nicolò ». 2021 has arrived. “I wish that all the parents who are in our situation have strength and hope, somewhere there is someone, a person or an angel that can help support this situation. As long as our little ones are here, the last word is not said, we must have hope, says Mattia Martín, I hope it has been an example for many, that was also my goal. Parents live for their children. I want everyone to have the necessary consistency when children are sick, for treatments, therapies and physical therapy. The doctors tell us that they are happy because Nicolò is recovering well from intensive therapy on both respiratory and motor levels. Behind us there is also a lot of work on our part and the doctors congratulated us. Handling the child is difficult, it is like a job, it is demanding but you do it willingly. They come first. Wait”.
Last updated: 15:09
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