Doctors from all over the world give up, and foundations call patients "unprofitable."
As an infant in the hospital, Amina Zakrieva surprised everyone when she did not cry from the injection. Nobody thought about masculinity - not that age. The child was then given other injections, and the result was the same. On the second day after giving birth, the doctors admitted that they had never seen anything like this.
Amina gnaws at her fingers. Then she will not have nail plates. Photo: PERSONAL ARCHIVE OF THE HERO PUBLICATIONS.
The doctors consoled the mother: these are the consequences of an intrauterine infection, everything will pass. But before giving birth, Patimat Nurmagomedova wore, according to analyzes, an absolutely healthy child. And she herself is close to medicine - a nurse by education. Therefore, I did not believe the words of specialists and went to personally understand the problem.
- I got to the infectious disease specialist, and she told me: “She has no infection,” Patimat recalls. “She assumed it was a malfunction in the immune system. This is also a misdiagnosis.
At three months, Amina had a fever, but she did not react to the illness. Antipyretics did not help. Teeth cut through at six. Instead of a nipple, she chewed (and gnawed) her tongue - and did not feel pain at all. By the time she was seven months four teeth had fallen out.
- I started going to our doctors again. One and the same theme, - Patimat admits. - We were offered treatment, they promised that it would pass by a year. But nothing passed.
Amina tries to live fully, but it does not always work out. Photo: PERSONAL PAGE OF THE HERO PUBLICATIONS IN THE SOCIAL NETWORK.
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One day the mother met a child without a diagnosis and with symptoms like Aminat's. She recommended a clinic in Moscow to his family, where the boy will be cured. And they listened to her. The day before the departure, the parents of the accidental baby took away copies of Amina's documents. So the medical history of Amina became known to the capital's doctors.
- Everyone told us that we had to go to Moscow. But my husband was against it. He said that we have a complete Dagestan of familiar doctors. And all the docents, then the professors. I dropped my hands. Alive, healthy, and glory to Allah, says Patimat. Subsequently, the father left the troubled family.
Amina with her mother at her brother's wedding. Photo: PERSONAL ARCHIVE OF THE HERO PUBLICATIONS.
In Moscow, they still revealed what the girl was sick with.
- We ended up at the Research Institute of Pediatrics. The doctor entered the ward, took tests and immediately blurted out - we have a syndrome of congenital insensitivity to pain with anhidrosis.
On the Internet and at her appointments, Patimat found out that this is a rare, poorly understood disease. There are about a hundred people in the world with such a diagnosis, and in Russia Amina is the only one. The main feature of the disease is auto-aggression, deliberate self-harm. Because of this, the girl has no nails: she chewed them out for herself.
People with this condition also don't sweat. As soon as it gets warmer in the spring - Amina's fever is under 39, in summer it will be under 40. And, bring her into a cold room, the temperature will drop to 35. This is anhidrosis - lack of thermoregulation.
The main misfortune of patients with congenital insensitivity to pain is that they do not know when they have health problems. Patimat told "KP - North Caucasus" that in Germany the same child died in a sandbox. It turned out that his appendix was inflamed, but the boy did not feel it and died in ignorance.
Amina with her mother. Photo: PERSONAL ARCHIVE OF THE HERO PUBLICATIONS.
She has been living with Amin's syndrome for 18 years. At home, she officially mastered the nine-grade program, but de facto, she cannot read and write. All due to illness. But the girl learned to do something around the house - wash, cut, remove, bring, find.
True, for a long time Amin cannot do half of this. When Patimat was at work, the daughter unsuccessfully turned around and fell. As a result, the pelvic bone on the left side was seriously destroyed. Now the girl is confined to a wheelchair.
3D scan of the hip bones. Photo: PERSONAL ARCHIVE OF THE HERO PUBLICATIONS.
Patimat's recent post about going to the cinema with her daughter. Photo: screen shot.
Amina has no chance of being completely cured. Even foundations call such patients “unprofitable”. But the girl dreams of getting back on her feet again - this requires a 3D reconstruction of the destroyed bone. Doctors from Spain, Turkey and South Korea can take up the case. But even for modest fittings, the operation will cost $ 30.7 thousand, or 2.2 million rubles.
Patimat asks for help from caring readers. She announces a fundraiser for the operation:
- 5469 6000 1221 8251 (Patimat Amirovna N.).
- 89387850781 (Qiwi wallet).
- amina0410 (PayPal).
ANTON SHAPOVALOV