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Apr 10, 2019

January-March

February 23 is a major holiday in Russia—the Defender of the Fatherland Day. It's a celebration of courage and perseverance in the face of adversity. In honor of this holiday, two years ago we shared stories of courageous dads—dads who bear no arms but who always have to live with a feeling of being on the battlefield, because you have to fight a war with a terminal illness of a child even if you're a pacifist. So, this year we decided to write and update about them and how they are doing.

Evgeny, Labinsk, Maxim's dad

“Maxim is the third child in our family. Our oldest child is healthy, but we lost the second one. At that time, there was no diagnosis as such: for four years our critical care physician was trying to pull him through—without anything, without therapy, on symptomatic treatment alone—but... he's gone.

Then Maxim was born, and it became clear that the situation was identical with the previous one. However, Max already has a diagnosis and treatment (though only provisionally efficient). By this age, Artyom was already gone, and he lived his life bedridden, while with Maxim we can even sit and play," Evgeny said two years ago.

Here is what he says this year:

“Max is now at home.

Back then, I believe, we were still in intensive care, and now, thanks to the Fund, we have our own lung ventilator and equipment.

 Nikita, our oldest, plays with Max every day, talks to him. They watch cartoons together.

 We don't plan, we live day by day: we're alive today—it's already good. This is how we do it.

 Max's speech has become more comprehensible. Well, comprehensible in a sense... Generally speaking, except for us, no one understands him, but he started to speak in sentences. We quote songs, cartoons. When we read his favorite stories, he speaks along because he knows them by heart.

 We're homeschooling as of September 1.

We know our letters and numbers. We can’t write, because Maxim's muscle state has worsened: one arm, and it barely works.

 People (the teacher, for instance) often tell my wife: “How can you be so calm? I would have lost my mind already." Somehow, we don't. It's been so many years, and we manage everything. We wish it could be better, but we're at home, we're together. Everything is not as bad as it could have been.”

 Vyacheslav from Barnaul, Polina's dad, says: “Everything is the same: I go to work during the day, and the day is gone; I come back home at night, and it's time to put everyone to bed. So, I spend a full day at work, but then I still have a day left. But I'm still at home, I don't go off the grid!

 At home, I help with the second kid: the son, Artyom, is all mine (we had him in 2015). I put him to bed, and my wife puts Polyushka to bed.

Artyom, our youngest, loves Polina. He comes, kisses her hand, and says: “Oh, Polyusha, I love you so.” He is nice with her, gentle.

 In the summer, in July and August, we go to a resort. It's beautiful, almost empty, and there's flowers and a pine forest. If it's not windy or rainy, we go straight to the pine forest. In June we don't—there's a lot of mosquitoes, and recovering from mosquito bites is extremely hard for our child.

 Oh yes, last year we went to an ostrich farm. Polina gets exhausted quickly in a wheelchair, but an hour's walk is manageable for her. She liked ostriches.

 My wife helps Polina to learn sounds, words, names of animals.

We're hoping to find an in-home teacher to help with motor development, as well as a speech therapist.

My wife and I are not teachers by any means, but we give Polyushka what we can.”

 

We are happy to support all of our wonderful and incredibly strong families with terminally ill children. And we're so glad that we always have your support, thanks to which the work of the Children’s Program becomes possible.

We would like to share the results of the Program in 2018 with you:

  • In 2018, 440 children in 66 regions of Russia received aid;
  • The average monthly budget of the children's program was 7.45 million rubles;
  • We signed 2847 agreements;
  • We conducted 840 legal consultations, 382 psychological consultations (with a schedule of 3 days a week), 417 medical consultations and 12 medical trips, as well as a countless number of consultations by coordinators.

 We achieved these results thanks to consistent help from you! Thank you so much for this!

 

 Below is the data on allocated charitable expenditures this time:

 01.10.18 through 31.12.18

 Medical equipment and its service … $86684

 Equipment consumables…………..... $73118

 Special nutrition……………............... $87916

 Financial help to families …............... $14635

 Transport services …………….......... $11860

 Funeral services ……………............. $2670

 Work of team of this project (coordinators, psychologist, lawyer and etc.) …....…………….......……………........ $43002

 Total …………….............…………….$319885

 

*We thank Veronica Demichelis for her generous help with rendering this text from Russian into English.

Jan 11, 2019

October-December 2018

Today we want to share our main achievements over the past three months.

We received a Grant from the Mayor of Moscow for one of the largest and most complicated projects of the Fund — a project to support hospices and their patients. This project is the heart of VERA Fund. Our Fund started with this project 12 years ago. Most often we tell you about hospice events organized within the framework of this project.

The Grant covers more than 10% of the project costs (total project budget for 12 months — 23 583 240 rubles), which will help us feel a little calmer.

 

We has restarted the web portal "Pro Palliative". It’s like Wikipedia about help at the end of life.

When a person learns about an incurable disease, he becomes afraid. And it’s important to give him the opportunity to easily find reliable information collected in one place and presented in an accessible language.

This place will be an educational portal "ProPalliative", which collected everything we know about palliative care: from simple materials for seriously ill people, their loved ones, and just interested — to highly specialized, which will be useful to hospice managers, doctors and nurses.

 

VERA Fund received a Presidential Grant in the amount of 13 295 525 rubles for the project "The Right to assistance at the end of life".

We often write that terminally ill people and their relatives don’t know where and how to get help. They rarely explain what will happen to them next, how to relieve their condition, how to get painkillers and protect their rights. They are confused, scared and don’t understand how to live. We try to make information about the right to assistance as accessible as possible.

As part of this project, we will continue to develop our Hotline to help terminally ill people, which works around the clock and seven days a week, free of charge, and ask questions about the care of the seriously ill, about painkillers, about hospices and so on. We will fill the educational resource about palliative care "Pro Palliative" with new information.

The Grant will help us to ensure the round — the-clock operation of the Hotline and decent work of the Pro Palliative - so that as many people as possible of our country know where to find answers to questions in the most difficult period of their lives.

 

Besides we had a race of Santa Clauses (when a half thousand people ran 5 km or 10 km), collection of Christmas gifts, concert of Nikolai Baskov and many other wonderful events.

VERA Fund's volunteers came up with a new Christmas tradition - decorate windows with beautiful winter paintings, so that there was a holiday everywhere.

 

Thank you for this year!

 

Our foundation has been spending the average of 157362$ to cover for the following needs of Moscow hospices:

 01.10.18 through 31.12.18

 Meals – $1971

Financial support to hospice staff – $19730

Coordinators’ work – $97513

Equipment consumables - $25326

Other expenses - $12822

Jan 11, 2019

October-December 2018

During these three months, we managed not only to provide families with seriously ill children with the necessary legal and psychological assistance, but also to provide all the new year gifts and to sum up the results of the campaign Children instead of flowers.

400 children across the country told us about their new year wishes. These are children who are seriously ill, their brothers and sisters. Our benefactors as the real wizards fulfilled every wish.

Also our volunteers helped us to arrange a holiday for seriously ill children who are in children's palliative departments of Moscow and therefore can not meet the new year at home.

We have summed up the final results of the action "Children instead of flowers".
You raised the fantastic sum -  53 250 357,19  rubles.

If in the first year, when the action was just in its infancy, it was, we can say, a sprout (less than a million rubles) — now it is quite a tree. Another record!

You are real and infinite love. Thanks for trusting us.

Thanks to you — all those who took part in the action "Children instead of flowers" - seriously ill children from different cities received help.

For example, Yaroslav has already been on a walk in a comfortable wheelchair — and the walk was not a torment, but a pleasure (according to Yasi's mother, the girl is sitting in a wheelchair as "poured").

Fedor with severe genetic disease spinal muscular atrophy (SMA) is now pedaling on the simulator — these classes prevent stagnant processes in a weak body.

Kirill has got a supply of food — the only one, from which the boy has no vomiting and convulsions. The cost of such food for the family was simply unaffordable, but you came to the rescue. Kirill began to feel better and even gain weight.

 

All of this is possible thanks to your generosity. Thank you!

 

 

  Below is the data on allocated charitable expenditures this time:


 01.10.18 through 31.12.18

 Medical equipment and its service … $208513

 Equipment consumables…………..... $84219

 Special nutrition……………............... $80605

 Financial help to families …............... $15696

 Transport services …………….......... $28389

 Funeral services ……………............. $1923

 Work of team of this project (coordinators, psychologist, lawyer and etc.) …....…………….......……………........ $60580

 Total …………….............…………….$ 479925

 
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