KLYUKIN NAZAR

1 year, Crimea Republic, Evpatoria
Diagnosis: primary immunodeficiency, Wiskott-Aldrich syndrome
Required: Nplate medicine 250 mcg № 1 - 2 packages, cost - 126 000 rub.

Story

21 January 2016:

While Nazar is waiting for the bone marrow transplantation he needs for the vitally important medicine -  Nplate 250 mcg № 1 - 2 packages, cost - 126 000 rub.

The medicine was assigned because of the risk of the life-threatening bleeding, but the Ministry of Health refuses to give it out at the place of residence.

 

What we’ve written before:

 

THE TASTE OF LIFE

Nazar was born in the family of the rural paramedic-obstetricians and it would seem such a family destined to give lives. But the problems with Nazar’s health started not only from his birth - but little earlier. He was born prematurely and the first time got to the reanimation after 2 days. At first he was treated for postpartum injuries. The doctors reassured that everything will pass that it happens. But no one told that sometimes it doesn’t pass.

 

Life under the suspicion

The child was covered with a terrible rash for three times in the first week of his life. «We need to observe him» - the doctors said. The platelets in the blood began to plummet in a month. The doctors continued to observe. Then they suspected an oncology, did the puncture and diagnosed - Idiopathische Thrombozytopenie Purpura - Mom Christina still slutters when she pronounces it, probably because of the shock than from ignorance, because she is a physician. Doctors gave him medicines, prescribed droppers, but the drop of the level of the platelets continued. The doctors were not particularly alarmed. Nazar wandered between home and hospital for 9 months. And then a terrible dermatitis started. «We are all covered with a crust even now» - mother says. It’s a normal thing for parents not to separate themselves from the child. Therefore the diagnosis and Nazar’s disease fully affect her.

 

"There is almost no food, that we can. If it’s possible to find anything, we don’t have the reaction on, it’s a miracle. So yesterday we got acquainted with the gratin. It seemed a normal one».

 

A sick healthy man

 

But could you explain to the little man, who just begins to try the taste of life that he just can’t eat anything? “He starts to require: Give! Buy!” - Christina is probably the only mom, who worries not because the child wants too much, but because she can’t meet his demands. Recently Nazar wants to move, run, ride a bike desperately. But with his platelets each fall and hurt means an open bleeding. Mom doesn’t allow, but he starts to rebel - acting like a real man.

It’s all about Nazar - he achieves all he wants. «A real man» - Christina proud. And she tells that her son is different from the peers, behaves more like adult, more responsible. He is kind of pioneer leader on the playground - he will gather everybody, take, show and explain. At home he continues in a same way - everything will be reported to the parents and everybody will be cheered up. Nazar already starts to command the nurses - shows where to put the dropper, the best way to prick. During the procedure Nazar sitting and reading the books. Of course he can’t read yet. But he already wants and pretends that he understands the text.

 

Two worlds - one childhood

“People ask me how does it feel like to be a mother of a sick child - Christina says frankly. - But I’m a mother of a healthy child in my soul! For the first time there was a panic, right. Then anger and humility. And then a hope grew out from all of these. They said that the transplantation is possible, that it can save my son. Of course, I’m afraid of the future. But every moment is a joy, just because he is here, alive and sometimes so healthy by his behavior and character!” Mom suffers not just from seeing how disease limits the world of Nazar, but she has to be this source of the constraints.

 

«It’s like we have two worlds - the world of disease and a healthy world. And we have the limited entrance to the second one.»

 

The borders are everywhere - where a normal person would never see the danger. For hypersensitive organism of a child everything is dangerous: water, food, detergent, which his mom uses to wash his clothes, the clothes itself.

 

Pride and prejudice

 

So far Nazar doesn’t understand his disease. And his peers are too small to notice that he is different. The main blow falls on his mother. The village is small and people start to notice that something is wrong. They come up, ask what happens to the son. They afraid to allow their healthy children to approach Nazar. Persuasions that Nazar is not contagious don’t help generally. And he is growing. So that is why I do hope for the soon transplantation so much - to let Nazar to come into a conscious age being a healthy man!

 

We are waiting too. In the meantime we will help Nazar to buy expensive special nutrition that can brighten up a bit he expectation and won’t allow to lose strength and taste for life!

 

 

What has been done

 

A special nutrititon Friso Pep 400 g, 9 cans, cost 8 820 000 rub. has been paid.