Maria has been married to Jaime for eighteen years and has four children: "Two on earth and two in heaven." she notes proudly. The great treasure, Nacho, arrived in 2016. He went into cardiorespiratory arrest as soon as he was born and that triggered a pilgrimage through hospitals until they came up with the diagnosis: Ondine syndrome, a disease that causes failure of the autonomic nervous system. The most problematic thing is that these children stop breathing when they are asleep. She was given a tracheotomy and her life became dependent on a ventilator. Maria recalls that they came home "with a real mobile ICU for the home: two ventilators, two aspirators for tracheotomy, oxygen cylinder and other materials.". He recalls that the first few months were very hard: "we could hardly leave the house".
Nacho's life gradually became more complicated: "The world of oncology and epilepsy appeared in our lives. The four of us became real pediatric ICU doctors, taking care of the trachea, learning how to manually ventilate, how to resuscitate him.". They would split the night between the two of them, because the sleep disorder required someone to stay awake with him: "While Jaime slept for four hours I was with Nacho and at 3:30 we changed shifts.".
In 2021 they entered the pediatric palliative care unit to receive complete care and not to stick to the medical aspect. In July 2021 they went to the beach to spend a month with the whole family together. Maria tells me that her father passed away that July 26, while they were still outside Madrid: "Nacho's situation made it unthinkable that I could go to say goodbye and to the funeral.". Two days later her son went into a coma: "We've always said they were like E.T. and Elliot, because the life of one depended on the life of the other.". Nacho passed away on August 24.
Maria remembers some funny anecdotes with Nacho, such as when she fell asleep during her shift and, at one point, she noticed that someone was pulling her toes: what a scare! The little one had climbed out of the crib. Since he couldn't talk, that was her way of waking him up.
Maria opened a profile on Instagram with the sole purpose of finding out what her eldest daughter was getting into. At @misuperheroesincapa began to share Nacho's life and his illness and the followers grew steadily: "I saw that transmitting our life was a way to teach that you can be happy close to suffering.". Through that social network many people have come to her. They made a #nachlistHe keeps a list on his cell phone with the intentions that people tell him they have asked him for. A few months ago a family friend had heart surgery. Maria sent him a message that morning to tell him that they would remember him very much and that Nacho would be with him all the time in the operating room. His friend told him that when he got to the operating room the whole team started to introduce themselves. A guy dressed in blue came up to him and said: "I'm going to be with you all the time, I'm Nacho.". He then asked about that boy in the ICU and to the floor staff, but no one knew of a Nacho working there.
Maria acknowledges that, at the beginning, she angered a little with God, but he explains that it is the anger of any child with a parent when he does not understand something. The first few months he repeated in front of the Tabernacle: "You got me into this mess, help me out of it and carry it with joy." On many occasions, the why of things. One day he realized that he had to look for the for what. The hashtag of your account is #cadadiaesunregalo: "This is how I have tried to live these years, because God was giving me a new day with Nacho, with the whole family, and I wanted to ask him for the strength to carry the cross".
