With only 7 years, Enzo has already exceeded more evidence than many adults. Diagnosed with epileptic encephalopathy with evolution towards the Lennox-Gastaut syndromea rare, severe and resistant treatments, coexists with constant epileptic crises, autism, ADHD, intellectual disability and motor problems. His mother, Ana, 36, dedicates her life to the care of Enzo and her twin brother Aday, also with autism and other complications. In this interview, Ana recounts with courage, tenderness and much clarity the challenges of the day to day, the loneliness that families feel, and the dream that Enzo can have an assistance dog that allows him to grow with greater security and dignity. It also does it through its non -profit association: Fighting for life (@luchadoporlavidaForcial).
An childhood full of obstacles from birth
Since Enzo was born with only 28 weeks, health problems have been a constant. Together with his twin brother, he received early attention from the first months. But it was with just over a year when Ana, along with a therapist, observed something unusual: Enzo had “absence crisis”, a sign that turns on that lit all alarms. “Everything started. We knew it wasn’t normal,” he explains. Since then, the journey through hospitals, tests, treatments and consultations has not stopped. The diagnosis of Lennox-Gastaut came after having unsuccessful several drugs. “It is a very complex epilepsy. Crises do not refer with medication, and that affects all its development.”
“Enzo needs more than medications”
Lennox-Gastaut’s syndrome is, in Ana’s words, “An unusual and very difficult pathology to treat.” Enzo crises can be mild or very violent, but they never stop at all. “There are days when you can’t even lower the stairs. He spends the sleeping hours, off. It is not the same child we knew a few months ago“, confesses. It currently takes four antiepileptics, although none has managed to stop crises completely.” Some drugs leave it sleepy, others do not take effect … we live testing and failing without certainty. “
A day to day that demands everything
Taking care of Enzo requires constant attention. It has a 75% recognized disability and dependency 3. His communication is mediated by pictograms that Ana has distributed throughout the house. “To know how it feels, to accompany it to the bathroom, to anticipate every step of the day.” At home there are no predictable routines. “With Enzo I have learned to live the present, to release control. Nothing is the same as the day before.”
Enzo is schooling in an ordinary school, but his current situation prevents him from attending regularly. “You need an adapted environment, with professionals who know how to react to an epileptic crisis. We have suggested a special center in which it would be more wrapped in adaptations, but we do not want to give up. We want it to be with other children, with adequate support, “he says. In Ana’s words,” real inclusion cannot depend on the pocket of families. “
An association to make visible and advance
The lack of aid and the high cost of the therapies led Ana to create their own non -profit entity: Fighting for life (@luchandoporlavidaoficial). “We couldn’t wait for someone to do it for us. Enzo needs more therapy, more stimulus, and also an assistance dog that helps him handle his crises and be safer in the street or at home. “The animal could also help you better anticipate dangerous situations.” But it costs thousands of euros, and there are no public aid for this. “
Aday, Enzo’s twin brother, too It has autism, respiratory problems and a maturation delay without defined origin. “Sometimes I feel bad mother, because I turn so much in Enzo that I feel that I careless to Aday. But they both need me, and I do everything I can for both of them.” The house is also adapted for Aday, and the pictograms serve to facilitate communication.
“It has made me more human”
“With Enzo I have learned to observe more attention, to understand the deep in the simple. He has made me more human, more empathic, more grateful. “Ana affirms that her son has shown her that” every little step is a conquest. “He learned to celebrate the most everyday: a spoonful, a gesture, a game without crisis.” Thanks to him I discovered that love is in being, to sustain, in singing even if there is no answer. “
When asked what would ask society, Ana is clear: “Research, professionals trained in rare epilepsies and public resources so that families do not have to choose between eating or paying a therapy“. Enzo’s situation, like many of many children with rare diseases, is in a limbo. They change hospital, but treatments are repeated.” Until someone gets with the key, we keep fighting. “
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