Happiness is just

Dima is four and a half years old, he loves the “mi-mi-Mishka”, play the doctor and cook on a toy stove. Visya is a little younger-he is only four so far, he loves to look with Dima “Mi-Mi-Mimka” and get treated with a cook friend. And also Via is an invented friend, because Dima does not have real ones because of the diagnosis

We help analyzes for children with primary immunodeficiency collected 5 059 024 R required 5 028 960 r help

Little doctor

Dima loves to play the doctor very much: he methodically analyzes the analysis, makes a diagnosis, prescribes treatment. The patient is mom. There is no one to treat Dima more: they live together. In addition to home and hospitals, the baby has not yet seen anything in life. And it's not about self -isolation, but the diagnosis of primary immunodeficiency.

The boy was born without the natural defense of the body: his immunity cannot cope with infections - and any, even not at all a terrible virus is deadly for him. Therefore, he is sitting at home, we are not talking about any kindergarten. And so far this is all that a loving mother can do: to protect her son from any contacts (after all, this is the risk of death) and give the last money for a night taxi to the hospital, where an urgent child is accepted.

Dima loves to cook photos: Julia Skorobogatova for TD

Dima began to hurt from birth. The first drops in an eternally laid nose - then still very tiny, you will barely hit - they began to drip in the hospital. We worked out home - and sleepless nights immediately began. But these were not ordinary infant colic, removed by dill water. Dima could not breathe normally - the nose was constantly laid, later the tears of the eyes began, purulent otitis media. And already in two and a half years, the baby underwent the first operation.

Doctors removed adenoids, but there was no improvement. In three and a half years, Dima surgically cleared their nose and ears from pus, even special shunts were put in their ears so that nothing accumulated. But all this did not solve the problem: the work was conducted with symptoms, and no one voiced the causes of the disease.

“After the first operation, it got worse,” recalls Dima’s mother Natalya. - A wild cough began, pneumonia was set, we were kept in a special box for several days. Doctors could not understand for a long time why one disease is replaced by another almost without stopping. And I’m even used to living like in a volcano: at any moment I was ready to break and go to the hospital. ”

Dima loves to draw photos: Julia Skorobogatova for TD

That is exactly - urgently - a small family fell into the Morozov hospital for the second operation. And there for the first time they started talking about a possible diagnosis. The primary immunodeficiency was confirmed only in the National Medical Research Center for Children's Hematology, Oncology and Immunology named after Dmitry Rogachev - after a long examination. And then finally it became clear what was happening.

"While the fund gives medicines, we are alive"

Primary immunodeficiency is a terrible diagnosis. Firstly, because it can be disguised as any familiar diseases: it seems that the baby is “simple” too often picks up viruses, or something wrong with his nose, or something wrong with the joints. Secondly, because without proper treatment there is a risk of dying from complications. Only complex therapy allows you to live long and fully, because it is necessary to determine exactly what is happening with the body of the child. For this, high -tech genetic tests are carried out, there are about 140 types of cell mutations that can cause immunity dysfunction.

“We made a few tests,” says Natalia. - This is a rather complicated story, the tests are all different and show different things. For example, one confirmed that the lack of V-cells from Dima from me. It is these cells that are responsible for immunity. But for some reason I do not get sick. Another explained why the son is not gaining weight, why he is often sick - it turned out that there were simple ulcers in the stomach and intestines. Crohn's disease. And this means that the bone marrow transplant is inaccessible to us - this is how immunodeficiency is sometimes treated. But in our country they do not do such operations in Crohn's illness, do not take responsibility. So for us all this is simply unrealistic. I don’t even think, I live one day. ”

Dima loves to cook photos: Julia Skorobogatova for TD

The impossibility of transplanting bone marrow means only one thing for Natalia with Dima: lifelong replacement therapy. Intravenous infusion of immunoglobulin and plasma transfusion monthly. Theoretically, drugs should give free the state. But almost all patients are faced with difficulties in “extraction” of drugs and procedures.

“After making a diagnosis, I thought that life was over, I just did not know where to run, what to do,” recalls Natalya. - It was the worst when I was faced with refusal to issue immunoglobulin in our clinic and refusing to overflow. If not for the “sunflower”, I don’t know at all what I would do. I'm so afraid to lose the child ... We are completely alone. We cope only because there is a “sunflower”. While the fund gives medicines, we are alive. ”

"Happiness when he moves"

A thin Dima does not gain weight: constant malaise, nausea, pain, drowsiness, difficulty breathing - you won’t even want the most delicious food. The most easily given food invented - prepared on a toy stove along with era. But a day for a day does not have to: sometimes not until cooking and strength remain only for sleep.

Dima loves to draw photos: Julia Skorobogatova for TD

“Sometimes such weakness happens that he does not even move,” Natalya admits. -On such days, any trifle can bring it to sobs: I put a leaflet for drawing in the wrong place or something else. Therefore, happiness is very simple for me: it is when my son woke up with fun, cheerful. Ready to play, run. With his era to chat. I'm not saying anything. This is inspiration, imagination. Let. When he just moves, this is already happiness. ”

Recently, Dima has become more likely to play and move. Health improves. Thanks to the participation of the Sunflower Foundation, Natalia’s life and her son’s treatment gained stability: there are necessary drugs, there is legal support (including official communication with local clinic in the paper language that she understands), there is an agreement with the Domodedovo hospice on regular free transfers. “Before that, we wandered around the Moscow Region for a year so that we were simply carried out with our drugs,” my mother explains.

But the main thing that appeared in the life of Natalia and Dima thanks to the work of the Sunflower Foundation is confidence and hope. The first burning horror of powerlessness and loneliness left-he was replaced by a sense of support and real, active help that help solo-mother more often to smile and rejoice at the achievements of his son. And ahead - additional genetic tests and the search for new treatment options.

Dima dreams of becoming a photo: Julia Skorobogatova for TD

“I know where to turn at a difficult moment, which will be supported in any situation,” Natalya assures. - There was a feeling of solid soil underfoot. And I’m even starting to believe that the day can come when we can walk for a long time, and not stealing, as now, instead of Vosi, Dima will have unreliable friends. I still try not to make ahead for a long time, but at least I already want to dream. There was no one before. ”

The Sunflower charity fund collects funds to pay for high -tech tests for children with genetic immunity disorders, so that every boy with Dima Korotkov can get timely treatment and eventually gain the present instead of invented friends of the present. Supporting this program, you support life in babies, and in their mothers - hopes and dreams.

We talk about various funds that work and help in Moscow, but Moscow experience can be useful and used in other regions of the country.