A small and very fragile girl Angelina can become a heavy burden for her mother for life. But mom is not discouraged. And we can make it so much easier for her.
Angelina's father disappeared, barely learning about the pregnancy of her future mother, Natalia. “And why do we need such a dad? The last time I spoke to him was in September. He does not even know that his daughter was born, and does not know that his daughter is so "fragile". Maybe this is for the best: if I hadn’t quit then, I would quit now, and we would be in more pain. But nothing, we can handle it ourselves, - Natalia laughs and continues, turning to Angelina. Let's sit and chat together. And then, tell me, sit here without me, I'm also interested.”
Angelina is two months old and has Osteogenesis Imperfecta, a rare and severe genetic disease in which calcium is washed out of the body and weakened children's bones sometimes break at the slightest touch. That is why these children are called "fragile". In most cases, osteogenesis imperfecta leads to disability.
Angelina's medical history began in her mother's stomach. “My entire pregnancy went almost perfectly, without any major complications. Everything was great until about the 32nd or 33rd week, when they began to notice shortening of the limbs, Natalia recalls. But nothing serious was seen then. Closer to the 35th week, the growth stopped completely, and I began to turn to other places for advice on what to do in general, where to run. In the end, almost everyone said in unison that we most likely will not live to see the 40th week: either we will be born dead, or we will die in the first few days. But we were born. And they screamed. Everything is as it should be, everything is as it should be. But only with fractures already. The legs, collarbone, shoulder and forearm were broken. Still intrauterine. Because of this, the bones began to curve, and now they are like arcs. Arms, legs.”
Angelina was never diagnosed with osteogenesis imperfecta before birth. Dysplasia and a variety of other related diseases and developmental disorders were suspected. It was already after the birth that Natalia, together with the doctor and using the Internet, self-diagnosed.
On the second day after the birth, Natalia and Angelina (mother always says “we”, as if not separating herself from her daughter) broke their shoulder. And then they ended up in intensive care for a month.
“On the third day, we were sent from the intensive care unit of our Zelenograd maternity hospital to the Filatov hospital. See what and how. As a result, we lay there for a week and were infected with enterocolitis. I didn’t have enough of my illness, they gave us something else, - Natalia laughs. We stopped eating, stopped breathing. And we were sent to intensive care with sepsis. We had blood transfusions for a week, fought for life. Osteogenesis imperfecta has already been forgotten. It was only about saving us.”
Angelina was rescued. But, returning from the hospital, Natalia realized that she and her daughter were left to their own devices and what to do next, she simply did not know: “I did not understand how to act. In Russia, it's always like this - people just don't know where to turn. On the Internet you can find a couple of articles, on different sites they write about the same thing. And that's it. For example, there are no recommendations for parents on child care. There is nothing.”
Natalia was lucky - her friends gave the phone number of Elena Meshcheryakova, director and founder of the Fragile People Foundation, which not only helps fragile children, but also tries to solve global problems: first of all, to ensure that the state pays attention to such children.
“I called Elena and she came to visit us. And with huge packages of gifts. But most importantly, Elena helped a lot psychologically. She just told me how to properly care for Angelina. We are still very young, but the foundation helps children throughout their growing up, tells them how to learn everything right from the very beginning, and in the future we really hope for their support.”
Now Angelina has another fracture - the other day her right arm broke. Since the arm is in a cast, and the girl is constantly trying to lift it, the mother has to fix the arm with a diaper so that the shoulder and forearm do not break under the weight of the cast. This is very disturbing to Angelina, but she almost does not cry. He just looks around with huge and very beautiful eyes. Seems a little surprised.
“We have little eyes,” Natalia says proudly and turns Angelina to face the light. - Usually, it seems to me, children do not see for a long time at first, they just open their eyes. And we see everything almost from the first days, she has such a conscious look, such large eyes, if she starts staring at something. We smile, we are amazing at all. And she is also very patient. Our arm broke last Wednesday. I realized that her arm was broken, only because she had not slept all day, she was a little capricious. But there was no wild cry or anything. We went to the injury, did an x-ray, it turned out - really a fracture. And I don't understand how she endures.”
The skull bones of fragile children are also softer than they should be. And the fontanel - a non-ossified part of the cranial vault - is larger and much longer overgrown than it usually happens - sometimes it heals up to three years. And this worries Natalia a little. “The only thing I do: I put a pillow under her head, such a circle of towel so that the head lies with a hard part, and does not touch the soft part of the bed. Other than that, he's just a normal kid.”
Angelina's father Natalia does not want to disturb. Better not know anything about her daughter.
The other day, Natalia and Angelina went for an examination at the Center for Congenital Pathology of the GMS Clinic, where a council of doctors made the final diagnosis: “type 3 osteogenesis imperfecta”. This is a severe form of the disease. Angelina's bones will break all her life. But proper and timely treatment can strengthen them a little.
Treatment already scheduled. At the Center for Congenital Pathology, Angelina will receive pamidronate infusions and work with physical therapists. This requires about 800 thousand rubles a year. All this is paid by Rusfond. But in the future, Angelina will need other operations, and after that - rehabilitation, trips to the camp and socialization. The Fragile People Foundation is doing this.
He organizes and pays for medical care for children and adults, purchases technical rehabilitation equipment, and provides psychological assistance to parents. The foundation also organizes camps where it gathers adolescents with osteogenesis imperfecta, engages in sociocultural rehabilitation, educational assistance, and consults parents on issues related to the disease.
"Need Help" helps raise money to pay employees of the Fragile People Foundation. Support the work of the fund right now. Every ruble you donate will help children with an incurable disease live a full life. And it's especially important that it be a monthly donation.