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 Health  Russia Project #21189

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

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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“Did you have any special nicknames for your child at home?” - Nikusha, darling daughter

“What was her favorite toy?” - a teddy bear that sang lullabies

“What did she enjoy most?” - she loved to be kissed, to be called sweet nicknames and to be hugged.

“What did she dislike?” - medical procedures that caused her pain

This isn’t merely a questionnaire. These are the memories of the parents of children whom the VERA Hospice Charity Fund was helping until the very end of their lives.

 On September 15th and 16th we all met for our first Remembrance Day. A total of 22 families agreed to join us and bought airplane and train tickets from various Russian cities like Tomsk, Cheboksary, Tyumen, Krasnodar, Ufa and other faraway places.

When a child dies, parents often have trouble allowing themselves to keep on living. They find it difficult to stop blaming themselves for the fact that they weren’t able to do much for their child (whereas in reality they did more than enough). Ignoring others that try to blame them can be hard, too (“They lost a child and now they’re dressing up and going out! They should be ashamed of themselves!”). Finally, it is challenging to find someone to share your feelings with; things that might be scary, or beautiful, or very private.

 As long as a child that suffers from a terminal illness is alive, the staff of VERA Fund try to do everything in order to spare his or her parents unnecessary pain and fear and to make sure that the child spends as much time as possible with the family instead of in the ICU. When a child dies, all that is left are the memories that we share. This is why bringing parents together on Remembrance Day was essential, regardless of the fact that they live far away from each other.

 It was very important for us to create a safe environment for the parents where everything is allowed: playing football with hospital clowns, swimming in the pool, sharing memories, consoling each other and crying together, baking pies and sharing food. And where they would slowly, step by step, let go of the pain, while not initially believing that it might get better. Finally, their main goal was to start feeling like themselves again, for those who passed away, as they would love to see their parents happy. 

 Late at night parents wrote down their children’s names and the most important words on white balloons and released them into the night sky. After a few minutes there were fireworks for those above, to let them know how much we love them.

“Did you have any special nicknames for your child at home?” – Tutunka.

“What was his favorite toy?” - “He had a small “Niva” car that he called Nuna. His granddad had a green Niva, and so did Arseniy.

“What did he enjoy most?” - he loved cars, tanks, tractors, and sleeping in mum’s and dad’s bed.

“What did he dislike?” - He hated hospitals and he wasn’t very pleased when his parents asked him to finish his porridge and go to bed.

We thank the parents that decided to join us, despite their hesitation and anxiety.

And we are very grateful to those who made this event possible.

 Your help enables us to not only provide the families of terminally ill children with everything they need, give them psychological and legal support, but also to stand by them after their children are gone.

 Thank you!

 

 

Below is the data on allocated charitable expenditures this time:

 01.07.18 through 30.09.18

 Medical equipment and its service … $109119

 Equipment consumables…………..... $107351

 Special nutrition……………............... $106871

 Financial help to families …............... $15160

 Transport services …………….......... $5092

 Funeral services ……………............. $5216

 Work of team of this project (coordinators, psychologist, lawyer and etc.) …....…………….......……………........ $50558

 

  

 

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

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We want every child to have a fun summer, even if a child is terminally ill. 
This is why we are so excited to receive letters and pictures showing a mom and a daughter hiking in the mountains or taking a walk in a park by an apartment complex and squinting in the sun together. 
This makes us happy because we know that these children could have been in the ICU, and doctors would have been trying to convince their parents to not visit anymore.
However, we can change this. 
VERA Hospice Charity Fund supports families with terminally ill children who have no access to palliative care in their city or village. 
We get involved if parents have lost hope in getting help from the government and receiving that which they are entitled to: functional wheelchairs, medicine, and diapers. 
We are there for them if they think of their lives as “before” and “after” and if they need help handling the accumulated fatigue and pain. 
We help if they need to purchase medical equipment which costs an inordinate amount of money for a common family but will ultimately determine whether a child will live in the ICU or at home. 

 

Just look at the letter written by Masha's mom:

“Right before May 9, the two of us - Marusya and I - completed a “rally” of sorts: Simferopol - Novy Svet, 110 km. 

We spent 2.5 hours on the road and had 4 “pit-stops” for the co-pilot Masha :)

Masha is a true Russian: she loves fast driving (for us, 80-90 km/h is fast); she smiled all the way. Just towards the end of the trip she started whining a little bit, and I had to sing children’s songs loudly, which calmed her down a little.

Just like a sparrow in a Russian children's book who stopped by different friends for a meal, we, too, stayed in Novy Svet for a day and then spent two nights at my friend's place in Sudak. I didn't dare to go swimming as the water in the sea was only about 17 degrees Celsius.  This trip was a test drive of sorts, nothing planned, just like everything else in our life.

Then the weather turned, and we hurried back home. It was raining all the way back home; sometimes it poured so heavily that the windshield wipers struggled, and the car swayed on the road.  To make matters worse, Masha had trouble lying still, she even yelped and cried sometimes - her dystonia bothered her as it usually does in bad weather.  So, we made many stops, and our trip back home took about 4 hours. This was a real test for both of us.

It was a huge achievement for me, since I've only been driving for 5 months. 

And I don't know anyone who would have taken a trip alone with a child in Masha's condition. Masha can't hold her head up, can't sit, can't swallow, eats through a PEG tube, and has a symptomatic intractable epilepsy, partly controlled.

I drive “Zhiguli”, the 10th model, which has no power steering, so driving through the twists and turns of a mountain road is new and exciting for me, and I feel like a rally driver even at the speed of 40-50 km/h. 

If someone told me 3 years ago what we would be up to, I wouldn't believe them,” - says Olga, mom of Masha who is sponsored by the children's program of the VERA Fund.

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

 

Below is the data on allocated charitable expenditures this time:

01.03.18 through 30.06.18

Medical equipment and its service … $146021

Equipment consumables…………..... $129960

Special nutrition……………............... $84612

Financial help to families …............... $24908

Transport services …………….......... $2499

Funeral services ……………............. $6900

Work of team of this project (coordinators, psychologist, lawyer and etc.) …....…………….......……………........ $67872

Other expenses …………….............. $579

 

 

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

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Two years ago, in December, we lost a little boy, Demid, from the city of Rostov, whom “Vera” Fund had supported. We continue to keep in touch with his mother, and several days ago a letter came from her with the news that Demid’s sister, Tanya, together with a friend started her own fund at their school.
 
The letter contained a picture and an explanation:
“And here is the heartwarming story: Tanya started a fund of her own. For now they only have two people doing all the work but they are actively recruiting more volunteers. This is the picture of the school announcement board. On February 7 Tanya asked the Arts and Crafts teacher to show the kids how to make birdhouses to be donated to the fund”.
With Tanya’s and her mother’s permission, we wanted to share these news with you.


Olga, whose children Oscar (12 yo) and Katya (3 yo) receive help from the fund, says:
“Volunteers from the fund “Vera” came into our lives and I finally feel at ease. Now we have all that we need and I am not as anxious and tense any more: I no longer spend time looking at the computer, my eyes red and tired, searching for medical supplies; I don’t keep vigil all night, checking my son’s breathing. We have our benefactors from “Vera” now and we have faith in the bright future of our children”.

 Highlights of 2017:

  • A total of 402 terminally ill children across the country received help from the fund
  • A total of 601 legal consultations with lawyers and 585 psychological consultations were provided to parents of terminally ill children;
  • 46 breathing devices and 28 wheel chairs were sent to critically ill children.

 

Below is the data on allocated charitable expenditures this winter:

01.12.17 through 28.02.18

Medical equipment and its service … $159019
Equipment consumables…………..... $121634
Special nutrition……………............... $96512
Financial help to families …............... $27938
Transport services …………….......... $2927
Funeral services ……………............. $2696
Work of team of this project (coordinators, psychologist, lawyer and etc.) …....…………….......……………........ $50952
Other expenses …………….............. $1009

 

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

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This September, it was time again for our annual event “Children in Lieu of Flowers”. We suggested that school children and their parents refrain from buying flowers for their first day back at school and instead, transfer the amount allocated for this purpose to our charity fund. Many supported our initiative and carried flags in lieu of bouquets to school. The initiative was a roaring success and helped us raise 688059$. Thus, we beat our record of last year, which was 313070$. We did not expect that! The collected funds went towards helping 463 families in different towns and smaller locations. We were able to buy artificial lung ventilation machines and other medical equipment, positioning strollers that support the legs, spine and head for children with weak muscles, children’s nutrition, medications and hygiene items. We were able to pay for the services of nannies –so that the parents could have a few free hours to tend to other important matters. Such time is precious and rare.

 

Have a look below at the positive change that the ability to live at home, not at the hospital, brings to a life of a family with a disabled child.

“Dear and esteemed staff of the “Vera” charity fund,

Greetings from the Fedorkovy family. We live in Bogotol in Krasnoyarsk Region. It’s been nearly 18 months that you have been providing help to our elder daughter Diana, who unfortunately has not yet come out of the coma that she has been in for the last 30 months.

We spent a year at the intensive care unit of a hospital in Achinsk (also in Krasnoyarsk Region). This was a difficult time for us. I, Diana’s mom, lived alone in an unfamiliar town; my days were spent between the hospital and the rented apartment. You helped us bring Diana home. She is now on artificial lung ventilation, and her condition is still severe. However – WE ARE AT HOME! We live at our parents’ place. They also help out.

And now to the big news. This May we became parents again – with twins, Tasya and Tema. These charming babies would never have happened if we had not taken our Diana home. And twins – this is actually a miracle for our family. It must have been a present from our Lord.

Quite unexpectedly to us, we became a large family. To say that it’s difficult is to say nothing. However, we are happy that we now have the twins. We’ll manage it all!

Thank you once again for your help and engagement in the life of our family.

We hope that one day another miracle might happen, and Diana will wake up. This is our most cherished dream”.

 

Below is the data on allocated charitable expenditures this autumn:

01.09.17 through 30.11.17

Medical equipment and its service … $306535
Equipment consumables…………..... $116552
Special nutrition……………............... $99922
Financial help to families …............... $33269
Transport services …………….......... $435
Funeral services ……………............. $8549
Work of team of this project (coordinators, psychologist, lawyer and etc.) …....…………….......……………........ $52780
Other expenses …………….............. $4730

 

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

Fedorkovy family
Fedorkovy family
Fedorkovy family
Fedorkovy family
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Organization Information

VERA Hospice Charity Fund

Location: Moscow - Russia
Website:
Facebook: Facebook Page
Project Leader:
Maria Bakhtina
Moscow, Moscow Russia
$20,725 raised of $39,062 goal
 
274 donations
$18,337 to go
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