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Jul 11, 2018

March-June 2018

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.

Mar 30, 2018

It would not have been possible without you

How can we make sure that every person gets help they need at the end of their life? We need resources: hospices, palliative care departments, home-based services; we need laws that would protect the interests of the patients; we need doctors and nurses, we need their hands that can ease the pain and ensure that our patients are treated with dignity till the end; we need volunteers and coordinators who can attend to our patients’ needs and provide them with care; we need publications and TV shows about hospice care so that people are not afraid to ask for help when they need it.

We strive to make sure that high-quality care at the end of life is available to all.
 
Highlights of 2017:

Olga, a hospice patient:
“When at the hospice, I am treated like a human being. I get stabilized so I can continue living for a while longer, enjoy my life and maybe learn something”.

 
Data highlights

  • A total of 16 coordinators provided for adult and children hospices and palliative care units in Moscow;
  • A total of 1400 events (joy carts, master classes, concerts, picnics and therapy dog visits) organized in Moscow hospices;
  • More than 2,000 volunteers donated 68,000 hours of their time to the fund and different hospices;
  • A total of 415 adult patients received support for their complex issues;
  • A total of 12 regional hospices and palliative care units received support from the fund (in the form of financial aid and resources).

 
Per Tatyana, the Chief Medical Officer for Palliative Care Center in Moscow, physicians providing palliative care need training on a daily basis. And we are talking not only about the constant need for additional knowledge in various medical fields; they also need to know how to provide social support, and at the same time they need special skills to communicate with patients and their families".

Data highlights

  • Russian and foreign experts provided training in patient care, pain management, communication skills, organizing assistance for severely ill patients to more than 500 medical specialists and social workers from Moscow hospices;
  • 600 regional physicians and nurses received training in palliative care for children;
  • 2990 physicians and patients’ relatives received free books and educational materials on palliative    care.

                        Without you, we cannot move the needle. With you – we can achieve a lot. Thank you!

 

Our foundation has been spending the average of 261516$ to cover for the following needs of Moscow hospices:
01.11.17 through 28.02.18

  • Medical equipment – $48639
  • Meals – $1150
  • Financial support to hospice staff – $106249
  • Coordinators’ work – $96279
  • Other expenses - $9199

 

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

Mar 30, 2018

Our year

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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