“Breathe, son.” A vibrating vest will help Timur cope with cystic fibrosis

Weekly “Argumenty i Fakty” n°9. More than 120,000 people have been evacuated from Donbass. What can we do to help them? 02/03/2022

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More recently, we celebrated Defender of the Fatherland Day. And then there is another important date on the calendar – Rare Disease Day. It's also about heroism and masculinity. From battling fears and illness, from living with a serious diagnosis – one on one. And of course, on faith and self-sacrifice.  Need help To save his lungs, Timur Batullin (7 years old, Perm) needs an anti-vibration vest for 1,050,500 rubles.

While Nina Batullina started a non-profit organization in Perm to help patients with cystic fibrosis, her 6-year-old son started choking. Name of the new organization – “Breathe” – Nina chose, referring to her son. For Timur to cope, he needs our help.

Cystic Fibrosis – fatal bad luck, which you cannot foresee. Here are two adults who met and fell in love, but had a child with cystic fibrosis. And it was only then that they discovered that they had been living with the same genetic mutation all along – the most common of all known. And their meeting, it seems, was also scheduled by someone from above. Long ago, in the second half of the 19th century, Nina's great-grandfathers, the first Bulgarian settlers, descended the Danube from Plovdiv and Sliven to the lands of Bessarabia for a better life and settled near Odessa. In a century and a half, their great-granddaughter will make a similar outcome, only from Odessa, passing through Kiev and Moscow. And she will settle in the Cis-Urals, over the years changing the Bessarabian dialect to Perm, but carefully preserving the language of her ancestors (and how it will suddenly become useful later when a Bulgarian pulmonologist arrives in Perm!). 

Marat was waiting for Nina in Perm. For him, she left the capital and a good job in an IT company. She left for a new life, and in this life Timur appeared.

During her pregnancy, Nina was informed that her son would have problems with his intestines. He and Marat really hoped it would work out, and they were planning to celebrate the New Year at home, the three of them already. But from the first day, Timur was taken to the operating room: jejunal atresia, stoma, resuscitation.

“New Year, midnight, Timur and I are alone in the room, I roar over a tea with charlotte, which my husband has delivered. And then the call: “Look out the window!”

The three of them really celebrated this new year together. At 12 o'clock sharp in the morning, Marat gave a salute under the hospital wall. And for a moment it seemed to Nina that there was not much time left to wait, soon everything would be fine and calm for them.

And a week later came the “heel” analysis. And Nina realized that now she would never be calm, because her son – cystic fibrosis. 

The Internet has said it all better than any doctor: the lungs are sucked in by a viscous secret that cannot be spat out, and over time they collapse. A gene corrector suitable for a child is not even registered in Russia. And there's nothing you can do about it right now, there's only one thing left for you to do – try to live. Send the child to a kindergarten so that he does not grow up in isolation. Negotiate and ask (“we have very good educators and a wonderful nurse”) so that Timur has a daytime inhalation and runs to work herself. Cut two salaries for a small box of Lego, realizing that more vitamins, inhalation solutions and many other things are needed. And now there will always be a shortage of money, even if you break a cake.

“Breathe, my son, breathe”, – Nina helps the boy with an inhaler. If Timur is healthy, you need to breathe medicine three times a day, if the next & nbsp; bronchitis – 9 times. Nina is fine. She learned to put her son on a drip of antibiotics and enrolled Timur in karate, music, and mental arithmetic. She was the first in the city to win a lawsuit, and Timur began to receive “Gia” inhalation solution heaven. of the state for free. Having learned that Gil Sokol, an Israeli physiotherapist, arrived in Naberezhnye Chelny, Nina walked 500 km and learned how to properly remove sputum clots from Timur's lungs. Finally, she began to help not only her child, but also others: she opened the autonomous non-profit organization “Dyshi” with the same mothers of children with CF. 

It was during this time that her son was diagnosed with respiratory failure. Timur has a dangerous infection in his lungs – Pseudomonas aeruginosa. In such cases, cystic fibrosis patients really need a vibrating vest that would clear the lungs effectively. But it is expensive and not issued by compulsory health insurance.

Timur and Nina really need our help now. Breathe.

And help others breathe.

Opinion  expert

Paediatrician, consultant of the Center for Cystic Fibrosis (Perm) Vera Shadrina:

– Timur – very difficult patient. Due to cystic fibrosis, the secretion in her lungs is thick and viscous. The child is given several mucolytic drugs that only thin the sputum. But you still need to get rid of mucus. The situation is aggravated by an infection with Pseudomonas aeruginosa, which we cannot cope with. In addition to physiotherapy, Timur needs additional equipment – anti-vibration vest. With it, the treatment efficiency will be much higher.

Help our heroes like this:

Send 8910 SMS with the donation amount in numbers, by example “150”.

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Bank details: BF “AiF. Good heart TIN 7701619391, KPP 774301001. Beneficiary Bank: PJSC Sberbank of Russia,  Moscow, BIK 044525225, p/s 40703810838090000738, p/s 30101810400000000225.

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AiF Charitable Foundation. Kind Heart” has been helping children and adults with various illnesses since 2005. You can help those who need support by signing up for a regular monthly donation of 30, 100 rubles or more.

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