“He was lying on my shoulder, like a whip, and didn’t even cry”

Every day for Arseny is the fight against disease, a struggle for life. His mother Anastasia is doing everything possible so he could breathe without wheezing, to eat without abdominal pain and vomiting. She learned to stop attacks. But she really needs help.

Arseny with mother Anastasia. Photo: Anastasia Demyanova

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Four-year-old Arseniy – disabled child. He has an innate incurable disease – cystic fibrosis – in which disruption of the exocrine glands, respiratory and digestive systems. In addition to cystic fibrosis, Arseny syndrome pseudo-Bartter. This is a life-threatening condition with a sudden decrease in blood electrolytes – substances that are responsible for transmission of nerve impulses and plays an important role in the composition of blood and metabolism.

Arseny sticky mucus in the lungs and a persistent cough. To liquefy and release mucus need daily inhalations and active charging. In addition, Arseniy completely lacking function of the pancreas.

No special enzymes (they have to drink 12-15 a day) the food is not processed and digested. He can’t be in places where a lot of people and there is a danger of catching an infection. The consequences can be very serious. Antibiotics, on the advice of doctors, he takes regularly. As preparations for the normalization of the liver, which suffers from a large number of drugs.

Arseny. Photo: Anastasia Demyanova

The tests I have to take regularly, most of them are paid. Many drugs, vitamins, baby food, need to buy themselves. Anastasia raises her son alone, does not work, because relations need constant care.

Wanted to have a daughter, and a man

“Mom, I’m so Biel!” – small Arseniy stares at mom big blue eyes and smiles. Smiles in response and Anastasia: “I Biel!” It is their Declaration of love. So simple and so touching. To say “I love you” Arseny still does not work – the delay in the development of the disease.

She always wanted a child, but to become pregnant for a long time could not. When you’re desperate and stopped to wait, I learned that to become a mom. “I really wanted a daughter. To four months was sure that I will have a girl. Dasha called her. Dasha, Dasha, Dasha… When four months did an ultrasound and said I have a boy, I was upset, cried, called my mom. She said, “What are you getting upset? You don’t even know how we men need! The boy is great”. It so happened that my mum and dad split up after 25 years of marriage. And father Arseny was abandoned. My mother and I lived together in our apartment in Kemerovo,” – says Nastya.

Photo: Anastasia Demyanova

In the hospital Arseny, like all newborns, took blood from his heel (neonatal screening) and sent home with his mother. But at home everything was ready for his appearance – cot, stroller, dresser with baby clothes in the bedroom that grandma had decorated with colorful balloons. “The kid in the house! Everything is perfect, nothing else! My mom was happy. 2 weeks…

And then we got a call from the medical-genetic consultation of the regional hospital. Said need to come with Arseniy and retake the blood test – suspected cystic fibrosis. I then name something you do not remember, does not really understand anything…” – says Anastasia.

“He was lying on my shoulder, like a whip, and didn’t even cry”

When he came to the result of re-analysis, the doctors confirmed that Arseniy high level of certain indicators in the blood. Sent to the provincial hospital for further examination. And then recommended to do a DNA test. The result came after a month. The diagnosis of “cystic fibrosis” was confirmed.

“It turned out that my father Arseny were carriers of the defective gene of cystic fibrosis, which is, of course, did not know. And the son is manifested.

In two months Arseny gave a disability. On the Internet, for example, that children with this disease do not live long, they are weak, they have a constant shortage of weight.

In General, Arseniy we have become like plants: we once again will not stand, guarded. Was afraid that the child will pick up any infection and it will begin to develop in the lungs. The most dangerous infection is cepacia, in which the lungs are rotting, cease to function,” – says Nastya.

Photo: Anastasia Demyanova

The lure began to introduce in 4 months. Was it a coincidence or just the course of the disease, but relations became bad. Not immediately, not in one day, but he gently refused to eat, he was constantly throwing up. If in 3 months Arseniy weighed 6.5 kg in six months, he weighed 5 lbs. and the Baby is not developed, but rather faded.

“He was lying on my shoulder, like a whip, and didn’t even cry. The chest is not particularly taken. Give him some children’s cereal – his tears. We were giving him his regidron, at the same time calling an ambulance. We were taken to the regional hospital, two weeks “dripping” oralit (glucose-salt solution), antibiotics, and discharged.

Doctors advised to accept: “you Have a sick child! This is the disease… always will be!” And I decided: “I will Not tolerate it!””

She was sure to help her can only in Moscow. Made an appointment in the Institute of genetics, took Arseny and flew away. From the Institute of genetics of the diverted to the cystic fibrosis Center at the Filatov hospital – Professor Elena Ivanovna Kondratyeva. It has appointed Arseniy therapy, told what food to include, what drugs to give, what to drink, what to pay attention to. For the month Arseniy gained 1.5 kg. Became merry, started to smile, to eat. Then Nastya had decided to move closer to Moscow.

Gave up everything for treatment

“If I said before that I’d drop everything and leave, I would never have believed. In Kemerovo I was content: I had a favorite job inspector for inspection at the airport, were friends. I decided to go there just because of Arseny and our wonderful doctor. She immediately sees that something is wrong, knows what to assign that passed without complications”, – says Anastasia.

Dr. Helena Nastya found out that Arseny is the syndrome of pseudo-Bartter – a disease related to cystic fibrosis. This is when the body decreases the level of salt, the child appears lethargic, he’s refuses to eat, loses weight. It is very dangerous. The child is not dead, it is important to stop attacks. They Arseniy grandmother learned how to do it. The condition Arseniy must be constantly monitored, especially in the hot season.

Photo: Anastasia Demyanova

Every day Arseniy weighed to know if he adds weight. Every month pass the crops. Anastasia carries them in three laboratories. If suddenly some kind of infection got into the body of the son, you need to start quickly to treat it.

In February 2018 Arseny had surgery in the Morozov children’s hospital removed polyps in the nose. Nose he almost wasn’t breathing, they have accumulated a lot of mucus, she did not move, began to deform partition.

Cystic fibrosis center, which is now located in Mytishchi, Arseny’s mom visits every month. Helena adjusts the treatment, prescribe medication, determines the dosage. A nutritionist monitors and assigns weight food.

Arseny now weighs more than 17 kg with height of 1 m. the disease it moderate. But, according to Nasti, surrender they are not going. Make inhalation (3-5 inhalations per day). Each day carry out kinesitherapy, vitamin therapy, antibacterial therapy, enzyme therapy.

Survey, food, medicines – all paid

“The cost is huge! Life-saving drugs we give, and relieves digestive, expectorant have to buy at their own expense. And many pass the tests at cost. In the village of Kiev, where we now live, Arseniy attached to the railway clinic. There are no specialists such as a pulmonologist and a gastroenterologist, no pediatric nurses. The nearest children’s clinic, in which there are these doctors, in Troitsk. It is almost 40 km away from us. Ride there all the time is impossible for us, because during long trips at high risk of catching some kind of infection,” says Anastasia.

Money for tests and special food the family needs. Grandmother is retired, mom is working. Arseniy constantly sick, it needs care, treatment, examination and hospitalization in case of emergency. Anastasia tried to send him to kindergarten, but every 2 hours was necessary to come and give Arseny medication because caregivers do not have the right, and the nurse is not always present. Arseny went six times to the garden and got sick.

Photo: Anastasia Demyanova

“He’s the commander! – said Anastasia. – Grandma sometimes calls him Bunny, but he immediately objected: “I am not a Bunny! I Arsenius!”

Most of all loves to play with cars, hide-and-seek, catch-up. Likes the outdoors a roller coaster ride. It is still small and does not understand that something was wrong that he was special. Asks, why did he have to drink so many medicines. But soon, of course, begin to ask questions. The disease is incurable, will have a lifetime to deal with it”.

To pay for the tests, medications and special food for Arseniy need 120 thousand rubles. We can help!

To help adults and children with various respiratory diseases to receive necessary treatment and to improve the quality of life of these patients, getting them special equipment, and you can, by donating any amount or by subscribing to a regular monthly donation of 100, 200, 300 and more roubles.

Go to the page collection at the Foundation’s website

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