The face of Tadrian and his parents, Víctor de Ara and Sandra Hernández, were yesterday the closest thing to happiness. “I have no words to thank how they did things after fighting so much,” her mother repeated.
He could not express his feelings after getting an electric chair for his 34-year-old son, who suffers from Angelman syndrome or happy child, a rare disease with some 20,000 registered cases in the world, although many are not diagnosed, since it is one of the main difficulties that families face.
last March 5 they requested in DIARIO DE ADVISOS a basic solution for the quality of life of his son and the Councilor for Social Welfare, Jonás Santana, mobilized, together with a social worker, to successfully achieve the humanitarian objective.
For Tadrian it is his main means of locomotion, the only way to go for a walk, go to the doctor or swim, although he is not the one who drives it, since he has a 90% disability that prevents him from doing so, just like other daily actions. such as dressing or eating alone.
He didn’t always use it. It was at the age of 14 that his scoliosis, derived from a disease that evolves as a person grows, began to become more pronounced and required the help of a chair.
For his parents it was essential to have this transport to be able to take him to the doctor and go for a walk, since they refused to allow their son to stay at home all day or his only way out was to the center he goes to. The one they were using until yesterday was over 20 years old and, despite taking care of it all this time and fixing the charger, the battery no longer worked.
They requested a new one from Social Security, but it was denied on the grounds that he was not the one driving it and, therefore, he was entitled to a “normal” chair. That means for his father, who is the one who takes him for a walk every day, pushing his more than 60 kilos, a task with a great physical load that is not easy as age advances and that an engine can reduce considerably. Yet all this time Victor refused to deprive him of a way out, because he can’t afford someone to do it either.
The fight of this family began in June of last year. Family doctor, specialists, neurologists… They went through all the professionals who have competence in Tadrian’s disease, who only limited themselves to reading the necessary requirements that they had to meet to have an electric chair, because the regulations of the National Health System requires autonomous management of it, something that is impossible for someone who, like Tadrian, has a total disability and who needs the support and assistance of another person 24 hours a day, every day of the year.
Seeing that their request was becoming more and more difficult, Sandra and Víctor decided to tell their case and fight to the last consequences against what they always considered an injustice, convinced that their son was entitled to an electric chair as he was given 20 years ago. back. And they did it, also, because he is not the only one. “There are many families that go through the same situation as us and suffer excessive bureaucracy despite having a person with special needs,” they stressed.
It was the Councilor for Social Welfare, Jonás Santana, and a social worker who personally contacted the family after hearing about their case, published in DIARIO DE AVISOS on March 5 of this year.
The mayor promised them that “he was going to help them”, but they never imagined that he was going to get them a chair, let alone one of those characteristics. “We didn’t even expect him to give us all of it, but rather that he would help us pay for part of it,” Sandra confessed. But that was not all. Yesterday he came along with Gloria and Sonia, responsible for Ayudas para la Vida orthopedics, and took her to her house. The president of the José Luis Montesinos Canary Islands Foundation, Lalo Martín, a non-profit entity with which Sandra collaborates, also had a great role.
A politician’s promise
“I have no words,” she repeated over and over again when everyone went up to her house with the new chair. “I did not expect it even remotely, and even less in this way, that a politician said that he was going to do something and did it. That he contacted us, because we did not tell him anything, since the person responsible for obtaining it was the Canary Islands Health Service and he did not do it, ”she said.
“It’s the chair we dreamed of and it’s going to change the lives of the whole family,” said Sandra. It folds up and has the rear control to make it easier for the person accompanying him to drive, a gift that Gloria and Sonia, from the Ayudas para la vida orthopedics, located in the municipality of La Laguna, gave him. It also has three batteries that allow it to achieve autonomy for many hours, a fundamental resource for a family that does not have a car to get around, although Tadrian’s two brothers, already with their respective families, are always available to lend a hand when it is necessary.
“But the best of all was that we felt supported, listened to and that they give us what corresponds to us without begging, without feeling that we are always indebted to someone,” said his mother, while adding that “it is the first time that We ask for something that we need and we receive it, and we have fought for many other things”. “With the Canary Islands Health Service we have had to do it for a long time and that suddenly the councilor appears and offers to help us, it has been a gift”, reiterated Sandra.
When he saw his new electric chair, Tadrian also looked around in amazement. And, although the smile on his face is constant, yesterday he smiled in a different way.
