“Tired of taking care of such a dependent person”

Elion Mayorga is 13 years old And a Autocratist A rare disease called MEF2C syndrome is severe. It was a diagnosis for years to arrive, and thanks to his father’s dedicated Carlos, he did not stop until he found the cause of his son’s autism.

Shortly after birth, Elien was admitted to the UCI by bronchitis and hopes that the situation could cause him Stroke Or even the accumulation of mercury, “stroke affected him to the speech zone, and they had an analysis for many years and saw him more Mercury in the brain He has to do in it, he also affected the kidneys, the leg -seizure, nutritional problems, digestion … ”says his father.

When Elean was four years old, Carlos, who did not receive the answers, decided to search for them, but I decided to study, but I decided to study. I have taken the masters of clinical neurological psychology, orthomolecular medicine, neurological therapy … I have to help my son, without exercising, without exercising. “

That curiosity also led him to seek the other side of the puddle, he knew that he was in the United States Spark A study of autopsy research has done genetic studies to find out the causes of tea- and decided to remove it until the sky and the earth enters. This is not easy, because only the residents of that country can participate in the study, “I had an IP from there to access a residence and reports. I sent the address to the address, from there they sent them to analyze, with results. Mef2c syndrome”.

Carlos took the ghosts, “I understand that they are not renewed in all the mutations and genetic diseases that have already been found in Spain, but have not been found here in Spain? Genetic analysis From the US, we will not have this yet, ”he says angrily.

We move all the families because pharmacists do not investigate diseases with 300 customers

He is also complaining a small investigation in Spain Minority diseases“We have contacted MEF2C FoundationThe man who created some families, thereby, raise funds to investigate. The study, which is being carried out in the United States, has already begun, but we need at least seven million euros to achieve potential treatment, because we are moving families because pharmacists have only a few hundred customers, ”he laments.

Many costs and little help

Later, Elien has already been 10 years old, “Treatments, trips, Badovan, Aba, speech therapist …”, as his father agrees, “many costs, and very low help, only 300 euros Biased More than 70% DisabilityWe are alone in the school because there are no public schools that serve children with autism, so we take it to a coordination. In special common, they put it in the same class with a brain stroke, another syndrome … and The tea classroom doesn’t work for cases like my sonIt is most affected. Her mother lives in three songs in Navalganero, we are from school, Madrid capital, but we have nothing else because he needs different things to learn. Fortunately, we can pay it, but not many. ”

Carlos takes 100% of his son a week for each two because he split up Share with your mother police. The time passing with him said, “He needs help for everything, he does not speak. He does not control the sparkers. He must continue to look at the danger because he does not know the danger.

The week that is not with Elean, “his mother receives more support by his partner, but I agree with Carlos I live alone and take care of him when he is with me. My parents are older, they can’t help me, it’s tired. I really want to see him, but the week he was with her mother, I realize that she had to relax. When I leave with his mother, I take an hour because I really need it, ”says semi -joke.

Carlos throws a lot more support in economic or format Family breathing or home aid“Someone or someone who can help us for a few hours, because it is very tired to take care of such a dependent person. It has to live.”

Good thing because you should always look at the good side of things, Ellian is a lower child, no behavior problems, so His peers are tired, but good“When we do not go as expected, we do not go beyond some tricks, but it does not give such problems,” Carlos agrees, “Hands moves, noises … there is no peion.”

However, in violation of how difficult it is for such a dependent son, this year, Carlos hurts him rather than exhaustion and is exhausted, that is, “See that your neighbors or children of your friends are progressing, and you will never realize that he will never play football or go to a game. Other children do not take it into accountThat he has no place. ”