I want to think about eyebrows

Alina 19, and all her life she dreamed of being like everyone else. When the doctors of different countries admitted that they could not help anything else, the hospice “House with a lighthouse” appeared in her life. And with it a normal life

Help a house with a lighthouse help

“At first I was skeptical - they say, why do I need an assistant,” says Alina. -But then I visited one Hospice event, and there were such beautiful Assistant guys that I said: “Mom, I urgently need an assistant!”

- Yes, and so you have Alena. More precisely, with me. I don’t know how I did without her, ”says Natasha, Alina's mother.

- She is my arms, and legs, and head. Without her, I would forget everything!

- And what a beauty!

- Oh yes, she is a beauty!

Alina at home photo: Natalia Platonova for TD Alina's bed : Natalia Platonova for TD

Alina and her mother cheerfully chatting in the kitchen of their apartment in bird cherry and in chorus telling which in the hospice everything is beautiful, as for the selection. And the psychologist who comes to them, and the nurse, and the attending physician, and the respiratory nurse. Alina, without ceasing, jokes, talks about her studies of animation, shows photos on Instagram and all the time speaks of the guys. Like an ordinary 19-year-old girl.

Tsarevna-Frog

Alina was born with multiple malformations: she has pulmonary failure, skeleton deformation and heart disease. “We were then set by Larsen's syndrome, I was 23 years old, there was no Internet, I didn’t understand anything about it,” Natasha recalls. - I did what they said. There were operations, resuscitation, rehabilitation, but nothing helped. ”

Natasha did not give up and did not lock herself at home - she drove Alina to the sea, went for a walk. “The mothers of other children simply silently squinted at her, and the children themselves all the time asked what Alina had with her hands. And we came up with the legend that Alina is actually a bucket of a frog, so she has special membranes with which she can quickly swim. I remember we told this, and the next day, one girl glued her fingers with tape to be also a foreman.

Alina with her mother and younger sister Vera photo: Natalia Platonova for TD

When Alina went to first grade, her back began to bend, and by the age of eleven, she generally turned into the letter “C”. The spine was bending more and more, compressed lungs and preventing him from breathing. Our doctors did not help anything, and I realized that we should urgently come up with something. ”

Natasha found a surgeon in Israel, who specialized in the installation of a special iron structure in the spine, which would not allow him to bend. She brought Alina to a consultation, the doctors said they would take, but it would cost 200 thousand dollars. In horror, Natasha announced the fee everywhere where she could, and managed to raise money in a week. “I cried with happiness: friends, relatives, just familiar and even strangers brought, who could,” says Natasha. “I couldn’t even imagine this.” Even the children broke their piggy banks and brought their pocket money. It was a miracle. "

Alina looks out the window photo: Natalia Platonova for TD Alina looks out the window photo: Natalia Platonova for TD

While Alina in Israel was prepared for surgery, it turned out that she had another innate vice - the so -called Ledda syndrome, that is, an anomaly in the development of the intestine. As a result, I had to do not one, but two operations. Alina and her mother and relatives spent a month and a half in Israel and returned to Moscow. “She was then 13, and she did not go even a year after the operation,” Natasha recalls. “I carried her to rehabilitation, read medical literature, and developed her a plan of classes, because no one else could.”

Alina began to walk, studied remotely and once a year went to Israel for verification and rehabilitation. But it didn’t become better - the spine continued to bend. And when Alina turned 17, it became very difficult to breathe. From birth, Natasha learned to sleep so sensitively that even from another room she heard her daughter's breathing stopped for a few seconds. “I am sleeping, but my ear is in the nursery,” she says. Natasha brought Alina to the center of pulmonology, and there they registered a non -invasive ventilation apparatus, Natasha sold everything that could still be sold, and for two years Alina was breathing at night with his help.

At night, Alina sleeps with the apparatus of the NILL, which allows you to control the breathing photo: Natalia Platonova for TD

“Now I am sleeping only when the device works: it is buzzing and I sleep with it,” says Natasha. “At first I was shy of the device, I didn’t want someone to see how I breathed with him,” says Alina. “As if I am some kind of alien who needs tubes to maintain life in him.” And now I got used to it. The only thing I dream that someday I will live with a young man, and then how will I sleep with him next to all these tubes? ” “You’ll come up with something,” says Natasha, smiling at her daughter.

Alina's anomaly of Ebstein is also an innate insufficiency of the mitral valve. “And this mitral valve sometimes makes itself felt,” Alina laughs. - He begins to praise in his chest, and then I say: “God, not now, I have not yet known love and have not moved away from my parents, please, not now!” And it always helps - it still beats. I am generally a mutant X. I want to be like Wolverine, especially since I already have pieces of iron in my body. By the way, I also have a bifurcation of kidneys, that is, I have four kidneys. My mother and I often joke that if it becomes completely bad, we will sell my extra kidneys. ”

Alina loves animation and has been studying at the International School of Multipliers for the second year. There is online training and a lot of independent work. She can sit in a tablet and laptop for hours and draw. And be distracted. And a year ago, Alina got worse.

Alina finishes homework for an animation school photo: Natalia Platonova for TD Alina's desktop photo: Natalia Platonova for TD

Doctors in Israel shook their hands and said that they could not help anything else. Then Natasha found a clinic in America, which was built by Masons for children with serious illnesses. Natasha raised all her friends on the ears and went with Alina to Texas. “This is Scottish Rite Hospital, and it's just space,” she says. - Such an attitude, such kindness. They collected consultations of thirty doctors there and apologized that they were delayed for ten minutes. ”

But even there they said that Alina could not help. They advised the daytime device for training the lungs in order to somehow slow down the process of compression of them. Natasha and Alina returned home. There was nothing more to hope for.

Between the two worlds

“It was very difficult to admit that no one else could help you,” says Natasha. - That your last instance is a hospice. I used to know about the “house with a lighthouse”, but I never thought that we would need it. But all, the doctors are over, nowhere else to go. While you are looking for clinics, you have hope and some other possibilities. But when they are all exhausted, you understand that you have come to the final point. And this point is the hospice. ”

Alina with her mother on a walk photo: Natalia Platonova for TD

For several months, Natasha lived with his gritted teeth and tried to reconcile with this thought. Then he gathered her spirit and called the "House with a lighthouse." “When I called, my hysteria began, I roared in the phone. And at the other end there was a woman, and she was just silent. And by her silence, I realized that she was the same mother like me, and she understands me. And it became easier for me. I filled out the questionnaire, and we were taken. "

A separate problem was to tell loved ones. Everyone said: "Hospice, oh God, no." “Mom at first did not say the word“ hospice ”at all, she said that she wrote me down in the“ house with a lighthouse ”. And then I accidentally heard this word, and then we sat together in the evening and she explained everything to me. I was not so much frightened as it was embarrassed that everyone around would say that I was dying. ”

But with the advent of a “house with a lighthouse”, the family’s life has changed. At first, Natasha asked only a psychologist for herself and Alina, but she received much more. Now the nurse, the attending physician, regularly comes to them, the coordinator, a respiratory nurse around the clock in touch. Another “house with a lighthouse” brings special protein food so that Alina gains weight better, gives her electric scooter and a shakelong for the bathroom so that it is convenient to wash. And once again a week, the beauty Alena comes and spends the whole day with Alina. Together they go to exhibitions, in the cinema - “in general, different motors”, as Alina says.

View from the window of the living room photo: Natalia Platonova for TD Alina photo: Natalia Platonova for TD

And the “House with a lighthouse” is constantly organizing events for the wards of the Hospice for Young Adults program. Boys and girls from 18 to 25 years old gather there - they communicate and have fun. Recently, Alina took part in the Mercedes-Benz Fashion Week Russia show, where Russian designers presented clothes for people with disabilities. She developed a series of prints for the inclusive female collection “Living” - these are huge eyes printed on T -shirts. “This idea came to us with Sveta designer three years ago,” says Alina. - They say that the eyes are a mirror of the soul, but when people look at people with disabilities, their eyes are the last thing they pay attention to. We decided that we could no longer endure these views, and an idea came to us - a huge eye, which everyone would look at. ”

“They are just crazy in the hospice there, they are absolutely not allowed to get bored,” says Natasha. -We constantly have some activity. A program for young adults is a whole community where everyone communicates and helps each other. ”

“I finally felt normal,” says Alina, for the first time not laughing. - Before the hospice, I was, as it were, between the two worlds - the world of healthy and sick. Until the last, I hoped that I could still belong to the healthy world, that they could help me, that I would become ordinary. I envied the problems of other girls, how they do beautiful eyebrows, how they suffer from a broken heart and all that. Yes, with the advent of the hospice, I realized that I have no way back. I will never recover. But when I came to their first event, I realized that they had the same problems. I made friends there with the girl Olya, she has a smell - and chic eyebrows. And, communicating with her, I realized that you can have simple life problems. We somehow sat with Alena, and I asked her to pluck my eyebrows. And she plucked, my eyes were already watery, and I was happy. I love my eyebrows! I love to think about eyebrows! "

Alina with mom photo: Natalia Platonova for TD

Children's hospice “House with a lighthouse” helps children and young people under 25 with incurable diseases. Provides equipment and medicines, doctors, psychologists, nurses, and nannies come to the house. And for their wards and their families, “House with a lighthouse” prepares holidays and away events so that they can simply have fun and feel like ordinary children and adolescents.

Let Alina jokes and laugh, let her draw, hangs on Instagram and discuss guys with new friends. Let him think about eyebrows, and not about tubes and pieces of iron in his body. Let her life be filled with normal things. And let her help her a “house with a lighthouse”.

Now, under the care of a children's hospice, there are more than 500 children. "House with a lighthouse" helps them all thanks to your regular donations. Please make a monthly subscription. It will take you two minutes and give them a normal life - to the very end.