The small Lucas just turned two years old on March 14 and already he is quite a fighter. And it is that, despite his young age, this little one of Linares de Riofrio It takes months of therapy to get to grips with the muscular dystrophy what causes the disease “Lama2” for merosin deficiency (a protein that can be found in skeletal muscle). For this reason, as explained Virginia Martinhis mother, he has no muscle tone and it is difficult for him to walk or cannot raise his head when lying down.
“The only thing we have is rehabilitation and therapy to get what he can improve”, explains Virginia, who points out how they started going to the hospital and now, once a week, she goes to a physio. She also receives another service at the home of Early attention. “With the physio we have it’s getting better little by little, it is gaining more tone ”, he points out. It was during the pediatrician’s check-ups that they began to realize that the little one was not turning around or raising his head, so they sent him some tests at the neurologist.
Finally, it was a genetic analysis and an MRI those who confirmed the fears that all was not well: “We knew that something happened but not that it was”. It was in June of last year when the results were received, that is, when little Lucas was just fifteen months old.
They say it is a hereditary diseasewhich usually happens between relatives, but neither Virginia nor samuel gomez, her husband, are aware of a similar situation. In this case, the problem seems mutated through the parents.
When you experience such a situation, parents start looking for solutions and they contact experts, associations and people with the same disease to exchange information, since it is a problem about which not much is known yet. Thus, through the neurologist, Samuel and Virginia contacted the association “ImpulsaT”of Barcelonasince it is at the San Juan de Dios hospital where this disease is investigated and treated. They have gone there with little Lucas and contacted other families in similar situations. “There are children older than 7 years, people of 30 and even a lady of 60”adds Virginia, who began contacting them last September and has already traveled to Barcelona or attended a conference in Madrid.
“Since we don’t know much, we have to live day by day and face what we can because we don’t know where we can go”, emphasizes the mother, who highlights the initiatives that will be prepared in Linares to help them with little Lucas, who also goes to the nursery. “Use a template and when it grows, you have to change it; also the seat, which is now made of plaster to adapt it to your body, but later it will change material, and we also have the beepera system that allows it to stand up and, at the same time, to remain attached”.
Virginia wants to throw a thank you message to those who support them in this fight, including their work because, he adds, “they have made it very easy for us in terms of consultations and the physio for which we are very grateful to them ”.
Everything indicates that there will be more reasons for gratitude at the end of april when Linares de Riofrio welcome different initiatives aimed at supporting them. So, on the 29th a paddle tennis tournament will be heldwhile on Sunday A hiking march to La Honfría is scheduled on the 30th to be able to raise the funds that allow the little one to cover the material needs that, with growth, are increasing.