Not healthy, but not yet died

Two months ago, Oleg managed to extend disability to his son. He is happy. Just think about it: disability is happiness. We live in a country where the state to treat sick children is already a victory

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Oleg is afraid of everything. To reveal your name, name of the son, to call your city and even the diagnosis of the child. Once the lawyers of the human rights project “Patronus” helped him defeat the system, but the second time may not be.

Anton is 14 years old, and he wants to become a doctor. Neurosurgeon. Despite the fact (or therefore) that he sees over the past four years of hospitals, injections and white coats more often than anything else. Now he can already leave home and once a week to travel to Moscow State University for children's courses "Future Doctor" and loves to get out of the house himself. Anton is at home school, because the medicine that fights his illness kills his immunity. So, he can become infected with anything.

Not quite a son, not quite sick

Four years ago, Anton had a temperature and did not drop for three months. Doctors of the district clinic examined in the suburbs in the suburbs, sent tests and found nothing. After three months of temperature, weakness and pain in the joints in the Moscow, a diagnosis was already made - autoimmune rheumatoid arthritis. That is, for some reason, the immune system of Anton considered the fabric of its joints by strangers-and began to systematically kill them.

Since that time, Anton has always been painful. Sit, stand, move. He could not tie the laces, walking was hard, life turned into torment. Where did the disease come from , doctors do not know. Anton never seriously hurt, loved sport and even studied in a children's football school. For an active boy, the disease was a double blow, and he fell into depression.

For an active boy, the disease was a double blow, and he fell into depression

Before the first diagnosis was made, Anton's parents listened to many versions from the doctors, up to bone cancer. Upon learning that this was not cancer, they were delighted - it was no longer up to thoughts about what disability is, for which it is given and what it gives.

Children's disability has no groups - it is either given or not. If there is a disability, the child should receive free medicines, a monthly allowance, a sanatorium once a year and a permit for home schooling. The first disability was given to Anton two years ago for a period of two years. Mom and dad then did not delve into anything, received expensive medicine for free and even went twice at sea. Everything changed when the disability began to expire.

Oleg increasingly heard from friends and doctors that the procedure for issuing disability had changed, that he was lucky two years ago, and that Anton’s condition may not be poor enough to extend disability. That is, the son is sick, but not too much. And formally, he is not even a son - Oleg is not Anton's father, which still exacerbated the situation.

Then Oleg decided to find out what benefits from the state Anton have the right to count on. Conversations with officials were useless - everyone repeated his own, and all together - nothing concrete. Then Oleg plunged on the Internet, but there he was even more confused, sitting at night in parental forums and drowning in correspondence with virtual lawyers. And then he remembered that there were acquaintances in charitable foundations. Through them I went to the Patronus project, which just helps parents to defend the rights of sick children.

Patronus lawyers explained to Oleg how to properly collect documents for the disability commission, and what exactly should be written in an extract from the hospital. Oleg controlled each record of doctors, persistently asked for the medical history to be as concrete as possible, find fault with each figure. The doctors were surprised, but Oleg achieved his. Disability extended.

Until February 2019, when Anton is 16. If the condition does not improve, a new disability will be needed - now until 18 years. After he will be considered an adult, and adults have three disability groups, and Anton will most likely get into the third. Which gives little.

He will never recover

Oleg, of course, dreams that Anton will become so good that he will not need disability. But the truth is that Anton will never recover. His disease is incurable, and the best that can be achieved is the state of stable remission. But so far these are dreams. The reality is that in two years the commission may not extend disability, and then Oleg does not know what will happen.

The father’s heart breaks between the prayers that his son is recovering, and the hope that he will be considered quite sick and provide benefits

Oleg and his Anton were in the absurd situation. The child is sick - but not enough for the state to treat him. He is seriously unhealthy, but does not die yet. And the father’s heart breaks between the prayers that his son is recovered, and the hope that he will be considered quite sick and provide benefits.

Anton is a terribly painful injection once a week, but he believes in doctors and the power of medicine. He wants to recover and heal people himself. Anton's mother believes in God's help. And Oleg no longer believes in himself or in the state. Only in lawyers "Patronus".

Everyone can get sick. For the first time, faced with a diagnosis of worse SARS, we usually do not know where to run and what to do. We do not know what rights we and our children have. And there are usually more of them than we think, and what they tell us. "Patronus" for free helps all parents to defend the rights of children to treatment and benefits laid down by the state. Please subscribe to a monthly donation so that the lawyers of Patronus can continue to help such as Oleg, fight and not be afraid.