Alvaro is 8 years old. When he was born he was so blond that his eyelashes and eyebrows were transparent. For us he was beautiful, perfect. One day, when he was six months old, we noticed that his movements were beginning to be more clumsy. We went to different pediatricians and they all said that our son was “lazy” and that’s why he couldn’t crawl, he could hardly eat and that’s why his hands were shaking. It took us six months to find a pediatrician who recognized these hand tremors as neurological damage as soon as she saw the child, and sent us to the hospital. The genetic diagnosis confirmed that he had SMA, and the words with which they described this disease were “degenerative and incurable disease”. These are words that I hope no parent will ever have to hear. We did not give up, we looked for therapies and specialists who would bet on our son. With a lot of daily physiotherapy, doctors who fought for him and thanks above all to the great inner strength that Álvaro has, we overcame the two years that gave him life, and when he was almost three years old, we got to know Marsi Bionics and CSIC’s project: The Pediatric Exoskeleton. A futuristic invention that achieved what absolutely all the specialists in SMA worldwide assured that a child like Álvaro would never do: walk. The use of this wonderful invention could mean for Álvaro and other children like him to live more years with a higher quality of life.
Durante el año 2021 el objetivo de la financiación fue de 31.770,00€, se logró recaudar 25.183,00€.
|VK||100,00€||April 05, 2022|
|Yelena||100,00€||February 22, 2022|
|Remanente de donaciones a 1 de Enero 2022||1.205,76€||February 14, 2022|
|Fernando||10,00€||February 13, 2022|