For our family it all started a few years ago when the mandatory electrocardiogram was introduced for children to be able to carry out even non-competitive sports activities. We didn't know then that something was going to start that we and our children would have to learn to live with.

The electrocardiogram of the youngest daughter, who was 7 years old at the time, was found to be imperfect and the sports doctor suggested further investigation before issuing a certificate of fitness. We turned to a first pediatric cardiologist who, after performing the echocardiogram, drew a heart, and spoke for the first time about thickening of a wall. When asked if we should worry, he replied: "No, see you in a year". And for a year we didn't think about it anymore. We also had the other two children undergo an echocardiogram, which turned out to be regular. The following year the thickening in our daughter's heart was still there, a few millimeters higher than that of the previous year. Asked for clarification, the cardiologist dismissed us quickly, even making confusion in the reports she left us for the visit of two of our children. We called her back a few days later to get her to explain better and to have the wrong reports corrected. We were confused. For the first time the cardiologist spoke of hypertrophy, of heart disease, saying again not to worry and to come back the following year. The following year we went to another pediatric cardiologist, who made the visit and the ultrasound to our daughter and for the first time we heard about "hypertrophic cardiomyopathy". He suggested doing a 24 hour holter and confusedly hinted at genetics. Our daughter, who was 9 years old, was treated throughout the visit as if she were absent and to the only question she asked the doctor - if she could continue exercising - he replied: "You have to do a holter". Upon leaving, our daughter asked us questions for which we had no answer: we felt totally unprepared. The doctor, although scrupulous from a clinical point of view, was hasty and superficial and gave us a report that we struggled to understand.

Since then began the search for an expert, initially in echocardiography to confirm the diagnosis, and subsequently a cardiologist specialized in the discipline, because we realized that this hypertrophic cardiomyopathy was not too well known. We preferred to approach a true expert in the evolution - during the life of patients - of this heart condition, especially when it is diagnosed at a young age.

Finally we met Prof. Cecchi, who literally took us by the hand, explained everything that could be explained and addressed us and our daughter with a clarity of thought and words, of which only a doctor who knows what he is talking about can be to be able. For the first time our daughter, the real patient of this story, despite her young age, was heard and asked if she had any questions, which were given ample answers and reassurance, without hiding the sports activities that are no longer allowed and the cautions - also in terms of food but above all in terms of lifestyle - to be taken. We finally felt guided. He explained to us, gave scientific references, told about his experience, gave an overview of the situation, directed towards extended medical checks at a family level. We understood that Cardiomyopathy did not concern only our daughter but potentially also other family members, and thanks to the genetic investigations carried out, we have greater awareness (but we do not hide it, also greater concern in perspective) of what we could expect in the future. Having entrusted ourselves to a doctor of great experience but also of great sensitivity towards children, reassures us and helps us to look to the future with the hope, that they can have a more normal and fuller life as possible, trusting in research and growth. knowledge of this heart condition.

We enthusiastically welcomed the proposal to be part of a patient association and make our contribution, hoping to help those who find themselves in situations similar to those in which we parents found ourselves. After the initial disorientation induced by the diagnosis, we needed to see a path, to trivially understand what our children can or cannot do, supporting them in a delicate phase such as that of a teenager to whom we may soon have to say and above all convince. to change your lifestyle.

We strongly think the association AICARM Onlus can help not only the patients themselves, but also the patients' families, also sharing a network of specialists experienced in Cardiomyopathies.