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Support 169 families with terminally ill children

by VERA Hospice Charity Fund
Support 169 families with terminally ill children
Support 169 families with terminally ill children
Support 169 families with terminally ill children
Support 169 families with terminally ill children
Support 169 families with terminally ill children
Support 169 families with terminally ill children
Support 169 families with terminally ill children
Support 169 families with terminally ill children

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

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There are hospices that are unlucky. They stand in the background, as if they were hidden — not to see and not to know.
The first children's hospice on Chertanovskaya street is just like this. Not everyone who lives in the neighborhood knows that the only state hospice for children in Moscow is nearby.

More than 20 children live in the hospice — "parents" and those who do not have a mother and father.

In addition to medical staff, the children are assisted by the coordinator of the Vera Foundation, Sofia, and two nannies. And there are almost no volunteers.

Here's Kostya-he's a nanny.

Kostya says that he "works as an Elevator". That is, it carries children back and forth (previously, the building was a children's Home, and elevators were not provided). Then he laughs and lists:

"I'm having a racing wheelchair on the site! Children are very happy that you can quickly move down the hill. There are children who react to something special: for example, you laugh — and the child also begins to smile. Some children like tactile sensations: you bring sand, the child dips his hands in it and sticks out for two hours in the sand, which we then sweep out of all corners. You can turn on cartoons, sit on the Ottoman — and watch together."

During the day, Kostya manages to spend time with only 5-6 children. When asked how another person — a volunteer — could help, Kostya answers:

"Honestly? A volunteer can help with anything. You can just be with the child next to you — and there will be no emptiness."


Ira, the nanny, tells:

"One day a volunteer asked:" What tasks will you set for me?“ This is jarring, because here the situation itself sets tasks: just be attentive and observant.

The day is built around the child. Say Hello to everyone in the morning. Treat the ward's mother in the tea corner with sweets. Taking a child in your arms is the best thing to do on a physical level. Call the nurse and say, " I think the baby has a fever." You can bring a box with nonsense like a bell and tinsel — this is the only joy available to a child with poor tactile and sound experience.
Oh, Yes, you can click! Someone stops and listens.
Sing a lullaby. Ask "what did you dream?"- and most answer this question "probably something good, probably a soft bear or a horse..."".

On the question of what is more important, the Ira answers:
"You can just be with the child next to you."

There is nothing heroic or beyond genius in the help list. But no volunteers come to the hospice. They don't think they can do anything. But if you can click, that's a lot.

These three months we have been looking for volunteers who would fill the children's hospice on Chertanovskaya with life – now there are more volunteers, and the life of the hospice has become more joyful.

 

In December, we launched the project "Find the Pink lady", in which we talked about the employees of the project "Help for children". We want to share with you a few stories of our colleagues.
"In 2017, the Foundation received a call — the thin voice of a very young girl sounded in the phone. This was Maria from Rostov-on-don, the mother of the boy Arslan — he was only a few months old, he was in the intensive care unit.

Due to an incurable disease, Arslan breathed using an artificial lung ventilation (ventilator). The mother was given a choice: to send her son to the children's Home (since only there in Rostov was palliative care for children), or he will be transferred from Rostov to Taganrog, where there are free beds in the intensive care unit.

But both options were not acceptable to Maria.

Together, we managed to get the child discharged home. Arslan met the New year at home, with a Christmas tree and gifts, and most importantly - with his family.
I explained to my mother how to get medicines, specialized medical nutrition, wheelchairs, and necessary medical devices from the state.

My mother not only achieved everything for her son, but also became a member of the Board of the regional branch of the all-Russian organization of parents of disabled children (VORDI) in the Rostov region.

Now it is actively working on the development of the system of palliative care for children, interacting with the leadership of the region, the Ministry of health of the Rostov region, and local NGOs.
She made sure that the palliative Department at the children's Home was transferred to the regional hospital — the decision has already been made, in the near future the Department will be repaired.

Maria supports other mothers of seriously ill children and shares her experience and knowledge with them.

Arslan is now living at home, celebrate the holidays, walking and developing. He doesn't spend his days in intensive care, as he might, but with his mother. For a child, the most important thing is to be with someone who loves you."

We thought that on the day of the lawyer, there must be a story from Anna, a lawyer for the "Help for children" project of the Vera Fund. It teaches parents not to be afraid of bureaucracy, to believe in their rights and not to give up-even if it seems that the forces are no longer left.

 

"Usually parents contact the coordinator when they are confused. After all, when they learn about the incurable disease of a child, they do not know what to do next, where to look for help.

When the Foundation begins to help, they feel that they are no longer alone. I can be called with any question-sometimes to discuss the necessary equipment, food or supplies for the child. And sometimes-when it's scary and you just need to feel the shoulder and support.

We try to make life easier for these families, so that they can finally think about life, about walking, about playing games, and about the child's childhood.

It happens that a second sick child is born in the family. This is difficult to accept, but in such cases, it saves knowing who to turn to for help. Families already understand that, despite the disease, the child can have a childhood.

Now I'm just supporting parents who have a child born again with an organic disease. We promptly sent the necessary equipment for the girl.
She will live at home with her family. And we will be there."

This is a story from Kira, coordinator of the "Help for children" project of the Vera Fund. Kira is in touch with 50 families from different parts of the country — morning, afternoon, evening and night.

Thanks to your support, we can work and help families with terminally ill children. Thanks!

 

Below is the data on allocated charitable expenditures this time:

01.10.19 through 31.12.19

Medical equipment and its service … $266614

Equipment consumables…………..... $100195

Special nutrition……………............... $87754

Financial help to families …............... $10466

Medicaments ……………................... $703

Transport services …………….......... $11180

Funeral services ……………............. $1309

Work of team of this project (coordinators, psychologist, lawyer and etc.) …....…………….......……………........ $86023

Total …………….............…………….$564244

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"I was sitting backstage on a chair, legs crossed, half crawled a little, and Basta walks past and says:" my Friend, you just need a cocktail!"" .

Misha is 18 years old. Like many guys at this age, he dreams of riding a gelendvagen, getting a tattoo, and even-to meet the rapper Basta.

Misha has been ill for the last five years and now lives in a hospice. The coordinator learned about his dreams and prepared a surprise.

One Saturday in July, Misha was taken to dinner with his mother. He realized that he was not going to the restaurant at all only when the car pulled up to the special Parking lot at the stage. "Basta! Basta! the crowd chanted.

Misha met Basta in the dressing room. For about an hour they sat on a white leather couch, assessing the rap battle, exchanging jokes and chatting. Then Misha went on stage and listen to Basta from behind the scenes.

"To observe the crowd that is singing songs and waving phones with the included lights... it's fun."

Misha's dream came true thanks to the coordinator of the Foundation and you. Thank you for your support and faith, it's not a disease but life.

 

Vanya from Tyumen has spinal muscular atrophy, because of which his muscles are weakened — he does not walk, does not sit, does not hold his head on his own. Vanya is in the seventh grade and dreams of working as a developer in Yandex. He also has cosmically long eyelashes.

Director of Yandex technology distribution Grigory Bakunov (known in the network under the nickname bobuk) and press Secretary Ilya Grabovsky personally gave him a tour of the floors of Yandex and gave Yandex.station – smart column with Alice.

Emotions are incredible!

Another dream of our ward came true.

These stories are about how, with your help, we can give these guys life - for the rest of their lives. Thank you!

 

Below is the data on allocated charitable expenditures this time:

01.07.19 through 30.09.19

Medical equipment and its service … $121468

Equipment consumables…………..... $120652

Special nutrition……………............... $133051

Financial help to families …............... $11395

Transport services …………….......... $5674

Funeral services ……………............. $785

Work of team of this project (coordinators, psychologist, lawyer and etc.) …....…………….......……………........ $55873

Total …………….............…………….$448898

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Over the past three months we made a lot of progress together with our volunteers and donors. Besides the daily efforts of the “Children's Aid” program, we have been running public fundraisers to provide specialized nutrition and medical equipment for our little patients all over Russia, purchasing the essentials, and organizing parties at the pediatric palliative care department of the Morozov's Hospital and the Moscow Children's Hospice... But there was one story that stood out the most and touched us deeply, and we would like to share it with you.

 

Five years ago, we learned that there is a girl in Kazan called Elya who is crazy about Japan.

 She loves anime, where you can have superpowers, kiss under the sakura branches, cry an ocean of tears, scream so loud that your cry would be heard on the other side of Tokyo, and steal hearts. Thanks to Elina, we learned who Naruto is.

 Elya was 16 years old then; she weighed 16 kilos and was diagnosed with spinal muscular atrophy type 2. The body muscles weakened, and her back folded like a closed book, which caused terrible pain due to the ribs sticking into the internal organs.

 Secretly, while her mom didn't see, Elya opened a letter from a Moscow surgeon whom her mom asked to operate on her daughter. The doctor wrote that he was afraid that the fragile girl would die on the operating table.

 Elya wrote back to the doctor herself, saying that she'd rather die than continue living like a closed book.

 The surgery lasted for six hours. The surgery helped.

 Plates (spinal braces) were inserted into her back, and her ribs stopped squeezing her lungs.

 We bought a lung ventilator for Elya, which will support her breathing, and an electric wheelchair, which will help her move around independently.

 Now the Fund regularly sends supplies and specialized nutrition to Elina.

 But what can we do about her dream of seeing Japan?

 We thought through various options, but no matter which way we looked at it, the long flight would be torturous—even a strong girl like Elya was not ready to take this risk.

 Mt. Fujiyama is not in Kazan. And not in Moscow either. But sakura started blooming in Moscow in early May.

 That's how the big Moscow-Japanese trip started. The Fund’s friends helped us make this dream come true. There was sakura in the Botanical Garden, the “Japanese Beauty” exhibition in the Arts Center, dinner at a Japanese restaurant with a special menu by chef Hideki Kishimoto, a boat cruise, a visit to the observation deck on the 89th floor of the Moscow City tower, Japanese sweets, and a samurai cat which came to Russia from the Japanese city of Nara.

 In a thank-you note sent from Kazan upon their return, Elya's mom wrote: “We even saw real Japanese—at the hotel and at the Bonatical Garden :) Everything that has to do with Japan, we saw enough of it in Moscow. Really, it is a stunning city; we didn't want to leave.”

  

Thanks to the help of our volunteers and donors, we provide families of terminally ill children with the necessary equipment and supplies, and sometimes even make the kids’ dreams come true.

Thank you for being with us and for helping us give terminally ill children the gift of real childhood with all its joys, big emotions, and discoveries.

  

 Below is the data on allocated charitable expenditures this time:

 01.04.19 through 30.06.19

 Medical equipment and its service … $50849

 Equipment consumables…………..... $50593

 Special nutrition……………............... $76306

 Financial help to families …............... $10003

 Transport services …………….......... $7693

 Funeral services ……………............. $4122

 Work of team of this project (coordinators, psychologist, lawyer and etc.) …....…………….......……………........ $61143

 Total …………….............…………….$260709

 

 

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

 

 

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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.

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Organization Information

VERA Hospice Charity Fund

Location: Moscow - Russia
Website:
Facebook: Facebook Page
Project Leader:
Maria Bakhtina
Moscow, Moscow Russia
$20,665 raised of $39,062 goal
 
273 donations
$18,397 to go
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