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“Can we not name our city in the text? And then my grandmother will have a heart attack if she finds out about the disease. It's hard to believe that a grandmother spends every weekend with her granddaughter, but knows nothing about her terminal illness.

But over the sixteen years of the work of the AiF. Good heart» his employees saw and not like that. Close relatives who were not aware of the collection for an emergency operation. Children who left school without knowing about their diagnosis. School teachers who don't believe in a student's disability because the parents never said anything. Neighbors and colleagues who, over the years of communication, have never noticed ear implants or a hearing aid behind the child’s long hair.

But why should parents deny the obvious and hide the child’s serious illness from everyone, including himself, you will be surprised ? Why bother with finding money for treatment, and not try to still get help for CHI? The reasons for this may be quite rational.

“I'm tired of answering questions”

Imagine answering the same questions to strangers every day. Why is your child coughing? What-what diagnosis? And is it contagious? And who is to blame and why can not be cured? They can ask at the playground, stop at the store, ask on the bus.

“My mother didn’t say — exactly what I'm sick of. She explained that immunity is bad, that the climate is unsuitable, that the lungs are weak. And even when the doctors confirmed that this is an incurable cystic fibrosis, and I may not even live to be twenty years old — my mother still continued to repeat “you are not disabled, this is not a sentence, you will be treated, you will live a long, long time” & hellip; And you know what? I am grateful to her for this. (Irina, 36 years old)

For some parents, such answers are easy: talking about a rare diagnosis of their child, they feel that they are also fulfilling an educational mission. The more information available — the less fears and less stigmatization of incurable diseases. It is these parents who often blog and post even very personal stories on social networks, not being afraid of either haters or publicity.

But such a large amount of information work requires resources, time and a special temperament. If all the forces are spent on fighting the disease and surviving, then it is easier for adults not to say anything at all, so as not to face the same questions and unsolicited advice every day.

And if the disease almost does not manifest itself outwardly or disguises itself as something familiar, then parents can sometimes hide the diagnosis even from close relatives and give out severe cystic fibrosis — for asthma, dangerous cardiomyopathy — for teenage swoons, and hide the lack of ears behind fashionable haircuts.

“My child should not feel disabled”

In the targeted assistance department of our foundation, each request for help is carefully checked by medical specialists and lawyers. And sometimes it turns out that the operation or treatment could have been at least partially paid for by compulsory medical insurance or state guarantees — if you apply for disability. But parents say — no, we'd rather take a loan, borrow from friends, sell a car, but not disability, not this life sentence.

“While I manage, I will never tell my child — what is his diagnosis. I won't say until the very end. In order not to read everything that they write on the Internet and not decide that life is over, that only the disease remains. I don’t want to live my whole childhood with the thought “I can die at any moment.” Or maybe tomorrow — once! and find a cure! And he already despaired, lowered his hands.

Sometimes parents deliberately protect their children by such silence from the stigma of disability (and in our society it is still strong), from tactless questions, from ridicule. And someone believes that life and medical circumstances can change and even the most terrible diagnosis — not yet a final verdict. Now we see this at the foundation using the example of Yegor Tsukanov, who after the accident could only move his eyes, and in 2022, after five years in a wheelchair, he suddenly has a chance to start walking again. Would this chance have appeared if Yegor's mother had come to terms with the finality of the diagnosis? Hardly.

Fund “AiF. Good heart» helps children and adults with severe and rare diseases. We provide medical, legal and psychological support to wards from the most remote regions. By supporting the — you help not only them, but also their families!

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Breakthroughs in gene therapy over the past 15 years, new drugs for previously incurable diseases, such as cystic fibrosis, the development of modern methods of diagnosis and rehabilitation — We see every day that science and medicine in the 21st century are developing at a rapid pace. So sometimes in a stubborn parental “my child — not disabled! a voice of hope and resistance to helplessness and despondency is heard.

Words matter, words can hurt. Sometimes the words “disabled” and “this is forever” may well take away the strength to live and rejoice. To prevent this from happening, psychologists working in the “Help Route for Families with Seriously Ill Children” project, implemented at the expense of a grant from the Mayor of Moscow (the grant was provided by the Committee on Public Relations), teach parents completely different words. Words that support and heal. The same psychologists lead the School of Peer Consultants of the AiF Foundation. Good heart» for all parents of our wards. School provides an invaluable opportunity to know that you — not alone and that sharing your stories is not scary. Let's do it together!

AiF Foundation. Good heart» helps children and adults with severe and rare diseases. We provide medical, legal and psychological support to wards from the most remote regions. By supporting the — you help not only them, but also their families!

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