Jaime has 13 years, loves the sea, go out for a walk and is happy doing errands at school. Jaime suffers a so-called "rare diseases", Mitochondrial Disease deficit in 1 complexIn addition to epilepsy, and is an alumnus of the College of Education Special Raquel Payà.
It's not an easy child because not to, but his mother, Mª Jesús, could not be more proud of him. He is handsome and loving son who is teaching to sleep alone after all durmiéndole her life.
Jaime is one of the 75 students Raquel Payà College since childhood attends the center and receives the necessary stimuli to improve their quality of life with activities like swimming, one of the things you like and you can enjoy weekly at school .
Depending cuts
The center, which will target the benefits to be drawn from the I Carrera Solidarity organized by Denia.com y Javea.com, are not exempt from cuts, as explained the directorMaite Martí. And every year the number of students increases and available therapies can not reach everyone. So they are forced to give preference in access to therapies to children who really need it, leaving the rest, they can also benefit from them outside. However the staff does an excellent job and try to somehow meet these therapies custom exercises in the classroom for each student.
But the cuts are, unfortunately, beyond the needs of the center. Families have seen their aid dependency was reduced brutal way. For Jaime's family, which has one of the highest degrees of dependency (grade 3, 2 level), have gone to collect receivables 530 74 euros monthly euros.
This is one of the biggest complaints of this group, which defends as Mª Jesús, "It is a right that corresponds to my son, because that money will be invested in him and his needs". Currently they receive free diapers way and have to cope with 40% of the medication after the establishment of famacéutico copayment costs that in some cases can far exceed the 300 euros per month.
"The feeling is that in the end it is always trimmed for them", Mª Jesús explains. "People are very worried that there is a train to Gandía, which is important, but we also have needs. We are a minority, but a very important minority.".
And it is growing Mª Jesús recalls that the number of children with problems, and that in the future there will be much dependence. "Now it's my turn, but it can be anyone's turn"says Jaime's mother.
The future of Jaime and children like him
Children who come to school every day may do so until the moment they meet 21 years. Then comes the dilemma for families: what to do with them ?. Because they all need to continue to receive stimuli throughout their life they have received at school and help improve their quality of life. But once outside, the future of these students is uncertain.
La Marina Alta It is one of the most forgotten areas of the Community, as they were confessed to in the Ministry in one of the many meetings they had with the Minister on duty. The lack of a day center has made parents of children with problems even consider the creation of a cooperative, but economic needs make it, for the moment, unfeasible.
But that day center that never comes is not only a way to provide parents life, "It is a fundamental right of our children so that they can continue with their quality of life and not lose all the learning acquired during their years in Raquel Payà".
Mª Jesús future poses with his son Jaime, wherever it is, but in a place that is cared for and their needs are met. Currently residing in Jávea, but it looks like when the little meets 21 years will have to move to a city that has a center that helps Jaime to continue learning and being stimulated.
To Mª Jesús, holding this I Carrera Benéfica for Raquel Payà It is an opportunity to make visible their situation and help make society aware of the problems that cut across families with dependent people around us. So she and her family will participate in the April 6 the walk. And Jaime too.
It is assumed that the state exists to help minorities, but it seems to be confused very often the money you have q go destined to them Hooray for the families of these people who struggle every day for the rights of their children a strong handicap! much encouragement and many more initiatives like this race.
He can barely survive local commerce, shopping center and a new center before and wanted to hear Denia on, now they want. It is that here you think with your feet? When you go to society and politicians in turn, to build infrastructure and improve the awareness there is also work to create puestros above all, improve the welfare of our citizens ?! I do not understand anything! The Health Partner Pedrera center and had to have been completed, the school expanded Raquél Payá and many things are more to finish first!
Curiously, on the same sheet of this article, ask Do you like the idea of a shopping center in the port open?
My answer is no, I'd rather a day care center for special children.
I know it does not generate the same money, but perhaps if parents could leave their children in a center so they could have a little more relaxed life and get to consume in different trades.
Maria Jesus is right. By law has created the right, but a right that although granted, such as constitutional or human rights cease to be a good intentions that do not go away no. It is high time that we stop demagogy and clearly we face the problems of our society without transferring false hopes or put candy then remove, candies necessity, not whim or shortsighted candy.