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May 27, 2020

January-March

By tradition, we share with you the stories that happened in Moscow hospices thanks to your support.

 

Do you remember Vlasta, who read "War and peace" aloud to a neighbor in the hospice every day? A Christmas miracle happened: Vlasta's dream came true — She attended the ballet at the Bolshoi theater! Vlasta loves the theater, but because of her illness, she could not get into it for a long time. And finally, everything worked out. The story through the eyes of a volunteer Zuli, who is friends with Vlasta and went to the "Nutcracker" with her:

"I Write and I can't stop. Today happened a fairy tale for Vlasta... On new year's eve, Vlasta went to the hospital, and there were many very painful procedures. Vlasta says that it was a hellish torture for several hours. What holiday is this? We were worried that she wouldn't be able to come to the theater. But, apparently, she really wanted to — and everything worked out. She didn't just arrive. She just flew on her wings! And somewhere at the checkpoint, when she asked about a benefit for a disabled person of group 1, they looked at her with a smile and great doubt. Rapture is a very weak definition of what happened to Vlasta all day and evening. She was very beautiful and very happy! "Today I am completely healthy, free and happy! I am filled with such joy that I do not feel my illness at all. Endorphins are off the charts. Even in my wildest dreams, I could not imagine that I would be sitting in a Large room near the stage. You can see everything here: faces, emotions, costumes... I can even see their breath!!! My God! This will stay with me for the rest of my life.“ Of course, this is a miracle. It's her first time at the ballet. In new year. at the Bolshoi. In some rooms, I noticed Vlasta furtively wiping away tears. I myself got goosebumps at the climax of the Pas de Deux 2 action :) And even the guy from the orchestra, sitting close to our box, smiled at Vlasta, often glancing at her. She was pleased, of course. "I don't want this fairy tale to end so soon," Vlasta said.... And we continued! We walked through the streets of the center, soaking up the new year's joy: music, lights, beautiful people in suits ... Went to have a snack and finish the story with a glass of champagne. You should have seen her happy eyes."

 

 

"Last night I went into the ward, and V. P. met me with the words: - our friend is very bad, look. Help him!" V. sits on the edge of the bed. Emaciated in the last few days, pale, with his eyes closed. Until the last very independent. He refuses everything: to go to bed, to eat, to drink. There's not much left, you can see that. I put my hand on his shoulder, talk to him, offer to help. Without a word, he takes my hand and puts it on his head. "Stroke it?" — ask. He also nods silently. I stand and gently stroke my head. So passes several minutes. Yu. V. asks for cold water and agrees to lie down. We put him to bed. He calms down and becomes quiet. His friends on the ward say: "you don't leave." He was gone this morning. Finally, the holidays are over, and you can just like this, without answering the phone or running past in a hurry, Pat on the head. Sit next to each other, talk, hear, see and spend."

Author - Mira, coordinator of the Kurkino hospice

 

One good day through the eyes of Marta — a patient of the First Moscow hospice. "In General, Martha lives on the Rostov embankment, but today we were in a hurry to return home, and to the ward of our hospice. Usachevsky market, of course, was not recognized. We approved the Vietnamese elephants, the office of the former government wine warehouse (then the Electroluch, and now there is a business center and beautiful luxury homes). We still don't approve of our roads. We are happy to have a warm winter. It was nice to meet people who smiled at us. On the way back to the hospice, we met Inga from a flower shop near the metro. We thank her very much - she has been helping us for a long time, giving us beauty and tenderness. And today Inga did not let us go without a huge armful of flowers."

Author - Dilnoza, coordinator of the First Moscow hospice.

 

In mid-March, Moscow began to talk more often about the coronavirus and the pandemic. Some of the Fund's employees switched to remote work. We were forced to refuse visits of volunteers to hospices and tried to do everything so that hospice patients did not feel deprived – the coordinators continued their work in hospices, we organized video calls and online concerts, held chamber carts of joy and watched movies, tried not to reduce the quality of our work in any way and did not change their principles-we hope that we succeeded.

 

We will tell you more about the life of Moscow hospices during self-isolation in the next report.

Take care of yourselves.

 

Our foundation has been spending the average of 115049$ to cover for the following needs of Moscow hospices:
01.01.20 through 31.03.20

Meals – $1840

Medical equipment and its service – $1490

Coordinators’ work – $104654

Other expenses - $7065

May 26, 2020

January-March

By tradition, we share with you the stories that happened in our children's program thanks to your support.

In January, our wards of families with seriously ill children across Russia continued to receive Christmas gifts. Moms and dads wrote to us: "We came from the hospital — and we were waiting for gifts at home:)". "The child is delighted with the bear-sleeping with him in his arms. We love you!". "When you lack friends, toys placed around your son raise your mood."

 

We continued to monitor the development of the situation with the purchase of unregistered medicines for children and issued several memos on how to get medical products and unregistered medicines (klobazam, diazepam, phenobarbital, midazolam) from the state.

Also, thanks to the advice of our lawyers, several other families received equipment from the state.

 

In early February, the hospital of the children's hospice "House with a lighthouse" received a license for medical activities! Officially, the hospital — a four-story and unrealistically beautiful house on Dolgorukovskaya, 30 opened in the fall of 2019. But without a license, the hospital could not accept terminally ill children and their parents. Only the field service worked, which provides assistance to about 850 families per year. Already in mid-February, the first patients will arrive in the cozy cabins-wards of the hospital. We are very happy for our colleagues and are happy that this joint project is entering a new stage and is starting its work with those for whom it was conceived – with seriously ill children.

 

Spring this year began not with traditional clean-up days, picnics and walks, but with a wariness around the situation with the coronavirus and the subsequent period of quarantine.

Families with seriously ill children live in isolation most of the time and know better than anyone how to arrange a comfortable life at home and make every day in the same space happy and different from the previous one, how to occupy the child, how to come up with some new activities and games. For many parents, this period was particularly difficult – we tried to share our knowledge with those who might need it now.

 

Here you can see how our wards spend their time in quarantine:

Svetlana from Krasnodar, mother of six-year-old Sonya with CNS malformation:

We decided that the quarantine should not be wasted. We will spend it as on January 1 - in felting, cooking and eating Goodies, watching good movies, gadgets, books.... And we will definitely bake a cake — our signature "Napoleon". Then we'll make a nice Cup of tea, cut off a big slice of cake — as much as our conscience will allow-and savor it. Our main task now is not to get sick. And only then, when the World recovers, we will solve the accumulated issues. But it will be later, and for now we are lazy for fun!

 

Yulia from Omsk, mother of five-year-old Zlata with a degenerative CNS disease:

In self-isolation mode, we decided to learn how to weave braids — because in normal times, there is not enough time for this. We also have a paper collection of Lol dolls. Printed, colored, and cut out. No matter how sad the situation is, it's great to be at home as a family.

 

Natalia from Ryazan, mother of five-year-old Lera with Aikardi Syndrome:

Lera and I like to spend time like this: my daughter watches cartoons, and I embroider beads or paint pictures by numbers. We are together-and everyone is busy with their own business. I spent two weeks embroidering a pair of swans. I hung them on the wall, and now Lera and I are admiring them.

 

Take care of yourselves.

 

Below is the data on allocated charitable expenditures this time:

01.01.20 through 31.03.20

Medical equipment and its service … $19223

Equipment consumables…………..... $57334

Special nutrition……………............... $57045

Financial help to families …............... $10822

Medicaments ……………................... $1058

Transport services …………….......... $8219

Funeral services ……………............. $2509

Work of team of this project (coordinators, psychologist, lawyer and etc.) …....…………….......……………........ $57064

Total …………….............…………….$213274

Jan 28, 2020

October-December

In the First Moscow hospice, which turned 25 in October, we spent Sunday with the concept of Last Christmas — when all family members gather in a large house, make decorations, decorate the house and do cleaning. At the same time, they enjoy spending time together and prepare for the climactic event in a relaxed atmosphere.

Such a friendly gathering and celebration of life would be the best gift on the birthday of the founder and first chief doctor of the First Moscow hospice!

We were worried that it would be empty — and even wet, unpleasant snow. But there were almost as many guests as registered. This is wow! After all, the First Moscow hospice is the warmest house in which it is not scary, because people love each other here.

Volunteers, neighbors, employees of Vera Found, doctors, hospice residents and their relatives all gathered under one roof. Among the guests is Yulia Karabanova, who 25 years ago became one of the first hospice volunteers. This holiday is special for her. Flipping through an album of archived photos, remembering faces.

Someone washes the Windows outside, someone washes the walls in the food hall inside. One of the hospice residents is Smoking in the hallway and petting a huge Labrador. Someone changes records, someone is invited to dance. Here and there flash "Want and help" t-shirts, children make chocolate candies, and the candles on the cake burn out by themselves.

It was an amazing double holiday-the anniversary of the First Moscow hospice and the birthday of Vera, who would have turned 77 on this day.

 

 

All these three months we held hands, were close, talked about important things and tried to fulfill our wishes. And we got even closer to hospice patients – our colleague Olga even celebrated her birthday there.

"I don't really like my birthday. I just don't like it.

When my friends asked me how I would celebrate it this year, I remembered that I had celebrated my 33rd birthday at the Tsaritsyno hospice (I worked as its coordinator at the time) — and realized that it was actually my dream birthday.

I decided to celebrate my birthday at the Rostokino hospice.

It was scary. You come to a hospice with a personal holiday, you don't know how people will react. In addition, I was warned that the hospital is "heavy" - when residents are not able to sit and, especially, walk; someone, for example, sleeps almost all day. I thought two or three people would be fine. But on the appointed day, a crowd gathered! Someone went into the hall in a chair, someone on the bed. One patient said, " I'll sleep here, but I'll Sleep with you."

I called my friends, and everyone did something to make the holiday happen: I bought cheeses, fruit, ice cream, flowers, cooked fragrant Uzbek pilaf, and cooked compote. They brought Monya, a volunteer dog.

Every hospice resident wished me well: "I Know what's most important."

The coolest thing is that Sergey and Irina arranged a concert.
Imagine what the relatives of those people who are being prepared for hospitalization thought: they go to the hospice — and there Galanin plays the guitar and everyone around him smiles. Even the guards.

One patient at first sat on the sidelines, her arms and legs barely noticeably twitching in time, and then as if she went into a dance! No one wanted to leave — they wanted to live and dance."

 

Thanks to the help of volunteers and benefactors, hospice residents had an amazing autumn — with its rustling leaves, baked apples and short walks. And after the fall came the pre-holiday, cozy winter time and a magical New year.

We want to tell you about the little things that made the residents of different hospices happy this year — about a rowan branch, Dickens, the black cat Herman and the orange horse Tolyunchik.

The interactive postcard contains 12 stories from different hospices — https://www.fond-vera.ru/ny2020 — lick on the asterisks and read the stories that happened because of you.

Thank you for being with us all this year and filling hospices with light.

 

 

Our foundation has been spending the average of 159889$ to cover for the following needs of Moscow hospices:

01.10.19 through 31.12.19

Meals – $2129

Medical equipment and its service – $6338

Medical equipment and its service - $19716

Coordinators’ work – $123393

Other expenses - $8313

 
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