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When Ainara was born weighing just a kilovery small to have been born in the 31st week of gestation. He was born early through a scheduled caesarean section because, as his mother, Erika Sandoval explains, saw that he no longer grew as he should, «it was a normal pregnancy until week 28, when they told us that I had stopped growing. They told me to be at rest, They made me an amniocentesiswhich came out correct because it only detects some diseases, and it was none of them, «says her mother, Erika.
However, three weeks later they saw that irrigation was no longer good and they had to make a caesarean section, «He was very small, he barely measured 35 centimeters and weighed 1,032 grams.» But little by little they realized that their small size was not their only problem, «in the hospital we spent several months. We saw how there were children who entered and discharge them, no longer. I was always very tired, asleep, it was hard for her to eat a lot …«
After two months they began to do more tests and saw that Hormones were missing«They didn’t know why, but they already warned us that It was likely that it was a rare disease Because there were many symptoms that did not know where they came from. They did genetic tests and found nothing. «
Until three years later they did not name what happened to him. Thanks to a random study in Saudi Arabia they saw that there were more cases like her, and that the two mutations in a gene could be related to the symptoms he had. In addition, they discovered that Both her husband and she were carriers«It is very rare, and not only that, but there was a possibility between four to develop the disease and developed it. Ainara has two mutations in one of its genes, the Hid1, and that causes it brain atrophylack of some hormones, has a lot of hypotonia and a quite severe psychomotor delayhas a disability of 77% and dependent in grade 3, «says Erika.
Today, there are only documented Six cases in the worldand one is Ainara. In Spain there is no one else. Erika believes that, in spite of everything, they have been lucky, «Ainara was lucky to be born in this country, because if it wouldn’t probably be here. Of the six cases in the world, three of them did not go from three years,» he says sadly.
Ainara is like a perennial baby. Do not control the movements and need a person with her and do everything
A radical change of life
Ainara is 9 nine years old and needs help for everything, «it’s like a perennial baby,» explains his mother, «everything must be done. He does not control the movements of the hands and For absolutely everything a person needs That he is with her and does everything. «
In addition, being a risk patient, with serious respiratory problems, He did not start going to school until he was 7 years oldnot even in the special education center that goes. Erika immediately assumed that it was impossible to combine her care with a job. He took advantage of the fact that his company was going to move the headquarters and gave them the option to take advantage of unemployment, to stop working, because Ainara was still in the hospital, «I did not even know that Cume existed, nobody told me about it, so, I finished unemployment and I have not returned to work,» he says.
Since then, He dedicates body and soul to herbecause it requires such specific care that you cannot leave it with anyone, «in addition to the fact that we have no family that can take care of it, it is impossible to find something that can combine only the hours of the school, in addition to their medical appointments, care … and She is not an easy girl to take care of, because she has epilepsy and respiratory problems that require care that you have to know. She is in the complex chronic program, and we have a series of equipment at home, because Sometimes you need oxygena machine that helps you move the mucus … is at home, but it is as if it were a household admission, you have to be qualified to be with it, «he insists.
In addition to these specific care, Ainara goes to several therapies, «cerebral atrophy – a part of its brain is missing – is intractable, but we can address the hormonal deficiencies it has, epilepsy … with medication, and try to make it develop as well as possible. You can’t do more because Nor is there an open research line«
Therefore, after school, Ainara has therapies, such as physio or music therapy, several days a week. To pay them, as well as the great countless orthopedic devices he uses, they have even resorted to a Teaming«We have the income of my husband’s work, the agency, but it is all private, and many devices that need do not cover them, so we turn to a teaming that we open to pay their therapies and devices. Many people help us.»
Ainara appreciates support with an immense smilethat his mother shares on social networks under the name of Ainara smiles into the world«On the one hand, It is our way of thanking those who help usand on the other, to make cases like my daughter’sand for society to see the enormous effort made every day many people with disabilities to get ahead, «he says excitedly.
Body and soul to Ainara
The work has not been the only one to resign from Erika, who decided, along with her husband, have no more children«We have 25% likely to develop the disease, but, although the geneticist offered us the possibility of doing a test in week 11 to verify it we decided not to do it. Ainara needs many care, I am delighted to be able to give them to them, I am the happiest mother in the world, and I don’t want to take away an hour from the care you needso we resign ourselves to not being. Our efforts are for her who is the one, «he says.
Parents of children with disabilities have to make a superhuman effort to give them what they need, and many families cannot
She recognizes that, despite everything, It has been good to be full -time caregiverhe has assumed it and does everything for his daughter. What does not be good is what is away from home, «each person manages it as you can … I know it is difficult to reach all the needs around the world, and I understand not all mothers can give us economic recognition for taking care of, but we should have another recognition, that we recognize what we do«, he claims.
In fact, he assures that many people mistakenly believe that parents with children with disabilities have everything resolved, «many people who do not know what the story is going to think that having a child with disabilities is almost like a bargain because you have many aid, they pay you everything … and it is not at all. We have to make a superhuman effort to give them what they need, And many families cannot give it to him. From what a person needs with the level of disability and dependence that my daughter has, they don’t give you 10%, «he says indignantly.
Therefore, he says that, many times, the hardest thing is not what they have at home, «the hardness of disability is not always inside the house, but out, because everything must be fought. In all my town there was not a park with an adapted swing. I requested that there were one and I had to make an instance to the City Council, something that the rest of the parents do not have to do so that their children can go to a park. What’s out is more difficult: The occupied mobility places, the architectural barriers, the damaged elevators … I get more tired of these things, which make felt more helpless than taking care of my daughter every day, «he says bluntly.
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