The ring opened

Vanya was afraid at school - suddenly he would break his leg again at a break. Vanya could not leave the house on his own - there was no ramp. Now Vanya has hope, plans and a chance to live without a wheelchair

We help fragile people help

Vanya broke twelve times in fifteen years. Several fractures of the thigh, collarbone - “but gypsum was like a body armor”, arms, legs. Twelve times - this is not so much. Vanya is a fragile boy. Literally. He has an imperfect osteogenesis, that is, the natural fragility of the bones.

Chronology of Ivan's Life: First Grade - half of the second - fracture - third grade - fourth - the last quarter of the fifth grade - again a fracture - from the sixth grade home schooling and a wheelchair. Doctors could not make a diagnosis for a long time. At first, the doctors simply said that the boy was to blame - too active.

Vanya photo: Evgenia Zhulanova/Schschi for TD

Vanya was generally born with a thigh fracture. But up to six months they did not recognize this, the doctors said: "We will not write anything in the medical record, otherwise you will drag us on the courts." With the last fracture, Vanya was no longer even taken to the Central Institute of Traumatology and Orthopedics. They said: "We do not know what to do with you, you can’t work on such bones." When Gypsum was filmed for the last time, the traumatologist did not even transfer Vanya to the table, suddenly something else will break on the table. And he moved crawling around the boy.

Stroller, sweets, tiger

For the past two years, Vanya has broken endlessly - as his mother Natasha says. “Doctors told us: “ There is no bones at all - cotton wool. ” The diagnosis was made only in June. Before that, they said: “ No, you do not pull on “ fragile. ” And our dad also broke! Inherited it.”

When Vanya moved to the stroller, he was eleven years old. In the apartment I had to push the furniture and even throw something away so that you could drive. Recently he was bought a new stroller, more maneuverable. I say to Vanya:

“You are chasing the apartment like a Schumacher.”

- Well, not very, I sometimes get stuck.

Vanya loves rice, millet and sweets. He cannot cook for himself: the kitchen is still too cramped for a stroller. The sweets from Vanya are hidden to the height of his height. He cannot walk for a long time yet, but he should get out of the stroller. Candy is a good motivation. Every evening he walks around the apartment - while on the wall.

Vanine bones. From the home archive photo: Evgenia Zhulanova/Schschi for TD

“I hope that next year at least I will walk on crutches,” says Vanya.

At home, Vani and Mom Natasha lives a dog Eric and a cat Masyan, who was picked up on the street. In general, Vanya loves living creatures. When he begins to talk about animals, he immediately comes to life.

- I would still get one Labrador, one pug, raccoon and tiger.

- And the tiger does not bit you?

“Then I will put a pug on him!”

Vanya goes to the pool. But the city has only one pool with a ramp. There is no affordable environment in Dubna near Moscow, where the family lives. There is no ramp in the school on the floors. Vanya’s medical disability commission was held in a building where there is not a single ramp at all. Natasha shares the observation: after the commission was transferred to this building, there were fewer official disabled people in the region - it is problematic to bring relatives to examination of bedridden patients. She also tells how friends went to Italy last year. They said later: “How many strollers are there on the street - we were in such shock! We have no so much in Russia. ”

“They don’t think that everyone is just sitting at home,” says Natasha.

Vanya and mother photo: Evgenia Zhulanova/Schschi for TD Vanya with Eric and Masyanya photo: Evgenia Zhulanova/Schschi for TD

Previously, when there was no ramp in their house yet, it was necessary to call friends to “take out” Vanya from the entrance. Now Vanya is for home schooling. Teachers come to him every day. He is a techie in the soul, with this it has already been decided. Informatics is his element. He says that he will become a programmer and create a robot-doctor.

Get out of the gloom

When Vanya switched to home schooling, he began to communicate less often with his peers. Saved the Fragile People fund. Each year, the fund is arranging a camp for its wards. In the last, in Sochi, they also invited Vanya and mother Natasha. The camp helps a lot: the largest and most important is to understand that you are not the only one. It was scary to go to where you don’t know anyone, Vanya says. But he made friends with his detachment and now continues to communicate.

And for Natasha, this experience is important because she first met people who are not afraid of her child.

- In recent years, we lived in a vacuum, everyone was afraid of us, they did not know how to treat us. We were afraid at school, because twice we broke our legs at school at breaks. And for them this is the police, the prosecutor's office, checks. And in the camp they are not afraid of children, nor children - their condition.

Vanya in the pool photo: Evgenia Zhulanova/Schschi for TD Vanya in the pool photo: Evgenia Zhulanova/Schschi for TD Vanya in the pool photo: Evgenia Zhulanova/Schschi for TD

Dad Vanya has recently been gone. Natasha pulls the family alone. At night and on the weekend, he works as an ambulance paramedic. And all week spends at home with his son. Natasha admits that before that summer she felt that she was in a closed circle and there was no way out of it.

- The fund's team in its own skin understands what I have, there are mothers of the same children like mine. Now the feeling that the ring has opened, we are going straight and ahead is a goal.

Step into another world

The imperfect osteogenesis occurs in 6-7 people out of 100 thousand-this is a global statistics. In Russia, they have already learned to treat him, but Vanya was not lucky to get to a specialist who would correctly diagnose this disease. After fractures, doctors put titanium plates to him, which are attached to the bones, and the bones of the boy are too fragile. These plates for osteogenesis are disaster.

There is already a more technological invention in the world - pin. These are the rods that are placed inside the bone to increase its strength. But until September this year, telescopic pins that grow with bone were not registered in Russia. This was only possible thanks to many years of efforts of the Fragile People fund. Now operations with pins can be carried out in Russian clinics, and this gives hope to all the “fragile”, whom only a wheelchair awaited in the future.

Early diagnosis is very important for "fragile" children. If Vanya’s disease was correctly diagnosed before, now he could even play football. The creator and director of the Fragile People Foundation Elena Meshcheryakova - also the mother of her daughter with imperfect osteogenesis - emphasizes that now the fund immediately gives the mothers of newborn children all the information about the disease, connects them with doctors and each other.

Vanya photo: Evgenia Zhulanova/Schschi for TD

“They communicate, share their life hacks,” says Elena. - Their children live in another world - where there are more opportunities in treatment and in communication. Our fund is needed to make it possible. So that those children who can walk can walk. And here much depends on timely access to information. Because Vanya does not walk, since her mother did not have this access even despite the proximity to the capital, where since 2006 it was possible to treat bones.

... Vanya says that he doesn’t really like football, but it seems to me that he is cunning. He also wants to once score the first goal in his life - and jump with joy.

We collect funds for the work of the Fragile People fund, which helps children and adults with imperfect osteogenesis receive the necessary treatment and consultations. Thanks to the “fragile” foundation, children do not remain in isolation and dream not about a new wheelchair, but about football boots and sneakers for a marathon. Further, “fragile people” have even more global plans - to achieve pins in a quota with surgical treatment. Then this medical product will be able to purchase a state, and operations for everyone will become free.

Please support the work of the fund. Each translated ruble, each, even the most minimum, monthly donation will help children and adults with an incurable disease to live a full life.

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