Only 7 years, Enzo has already exceeded more evidence than many adults. Eyephilopathy was diagnosed with epilepsy with evolutionary development Lenox-gastat syndrome. Disorder And motor problems. His mother, 36, 36, dedicates his life to the care of Enzo and his twin brother Ade, with autism and other problems. In this interview, Ana describes the courage, tenderness and everyday challenges, loneliness and dreams of families Enzo can have a help dog, it allows him to grow up with high security and ka ity. It also makes it through its non -profit association: To fight for life (@LuchadoporlavidAForcial).
Childhood full of obstacles from birth
Since Enzo was born with only 28 weeks, health problems are a standard. Together with his twin brother, he received early attention from the first months. But for more than a year, Ana looked at something unusual with a therapist: Ezo had a “no crisis”, which is a sign of loading all the alarms. “Everything started and we know that it’s not normal,” he explains. Since then, the journey has not been stopped through hospitals, tests, treatments and advice. The diagnosis of Lenox-Gastat came after many drugs failed. “This is one Leg -leg Very complex. Crisis does not specify with drugs, it affects all their growth. “
“Enzo needs more than medication”
The syndrome of Lennox-Gasthin, in the words of Ana, “An unusual and very difficult pathology to treat.” Enzo crises are mild or very violent, but they will never stand. “There are days when you can’t even cut the stairs. He spends sleeping time. Not the same child that we know a few months ago“, Agrees. This is currently taking four antibiptics, though no one can completely stop the crises.” Some medications leave it sleeping, and others do not practice … we live without the test and failing. “
The day for the day asking for everything
Taking care of Enzo requires constant attention. There is 75% Disability Authorized and Grade 3 Biased. Her contact is medieved by the Pigograms that Ana has distributed throughout the house. “To find out how it feels, add it to the bathroom, expecting every step of the day.” There are no predictable procedures at home. “I learned to live the present time with Enzo. To publish control. Nothing like the previous day.”
Enzo is attending a normal school, but his current situation prevents him from attending regularly. “You need a embrace environment with experts who know how to reflect on the leg -seizure crisis. We have suggested a special center and it is more covered in adaptations, but we do not want to give up. We want to be with other children, we want to be supportive, “he says. “
An association of visible and premature
The lack of assistance and the high cost of treatment led to the creation of their own non -profit organization: Fighting for life (@Luchandoporlavidaoficial). “We can’t wait for someone to do this for us. Enzo needs more treatment, more stimulating and a help dog, which helps to handle his crises and keep it safe in the street or home. “The animal may help you with the best of dangerous situations.” But it costs thousands of euros, which does not have public help. “
Ade, even the twin brother of Enzo It contains autism, respiratory problems and maturity delay without limited appearance. . The house is suitable for ADay and and picograms help with communication.
“This made me more human”
“I learned to look at more attention with Enzo, to understand the simple depth. He has made me more man, and more eagerly and grateful. “Ana confirms that her son has shown her that every little step is a victory.” He learned to celebrate most of the day: a spoonful, a gesture, a gesture game. “I found him to sing, thank him, no love, even if there is no answer.”
When asked what to ask in society, Ana is clear: “Research, professionals are trained in rare legs and Public resources do not have to choose between families eating or paying for treatment“. The situation of Enzo, like many children Rare diseasesIs in a lympho. They replace the hospital, but the treatments are repeated. “As long as someone gets the keys, we continue to fight.”
