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Oct 11, 2018

Our first Remembrance Day

“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.

Oct 11, 2018

A few significant stories that We Wanted to Share

Zhenya is 38. At the moment he is staying at the Nekrasovka hospice in Moscow.

In August Zhenya shared his dream with us, which was to celebrate his daughter Lera’s birthday with her. She is 13 years old and she lives at an orphanage in Cheboksary in the Volga region. Her birthday marks the beginning of the fall season in Russia (September 1st).

Cheboksary is Zhenya’s hometown as well, but since he was treated at the Blokhin Cancer Research Center he had to move to Moscow. Before his illness he took care of his daughter all by himself.

What a blessing it must be to have a thinking pattern like that of the VERA Fund volunteers who helped this patient’s dream come true:

It’s 700 kilometers away? Not a problem! One of the volunteers has a comfortable car and one of the doctors at the hospice is willing to accompany our patient 24/7 and make sure he has no pain.

Problems covering the travel fare? None at all, there are people willing to finance them.

Daughter’s birthday? The biggest gift was being able to hug her dad, who gathered all his strength to travel all the way from Moscow to Cheboksary. And naturally a birthday wouldn’t be complete without a teddy bear, flowers and a bracelet that will forever remind Lera of the most important encounter of her life.

No need for hesitation. One must simply act on it, as for some of us there may be no tomorrow.

Many thanks to all who helped with organizing this trip for Lera and Zhenya.

We believe that the smiles on their faces are “for the rest of life”.

Last week the Degunino hospice in Moscow welcomed a new patient, Liliya Ivanovna. She was an opera singer and is an Honored Artist of Russia.

Her son Leonid, an incredible jazz pianist who lives in the US, immediately took a flight home.

He was just on time to see his mother, stay with her, talk to her and give her a hug.

The following day she passed away.

Olga Tereshina, the hospice coordinator, told us the story:

“We were all hoping that we would be able to spend more time with them, but yesterday, while there was a flute and piano concert in the hall, Liliya Ivanovna left us.

Her son was still on his way at that moment, and I was worried that the music might be a little inappropriate and that it can make him even sadder.

But musicians are very special people.

After his mother passed away, we were spending time in the garden and Leonid was telling me about his mother, when suddenly, with tears in his eyes, he said the following:

“The girls were playing really well; mom must have loved it. It’s amazing when you think about it: even when leaving this world, musicians are surrounded by music”.

Friday, the day before the funeral, Leonid organized a concert for the patients, the nurses and the doctors of the hospice in honor of his mother.

“Mom asked me not to play too loudly. I did my best :)”.

 

These heartwarming stories would never have happened without your help. Thank you!

 

 

Our foundation has been spending the average of 151770$ to cover for the following needs of Moscow hospices:

 01.07.18 through 30.09.18

 Meals – $996

 Financial support to hospice staff – $83787

 Coordinators’ work – $64716

 Other expenses - $2271

 

 

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

Jul 11, 2018

March-June 2018

Just imagine: the very center of Moscow, Manezhnaya square, the city festival, and the VERA Fund's pavilion, where visitors get their make-up done and their hair braided, where Nyuta Federmesser uses a full-size dummy to show how to take care of a terminally ill person, where people learn why they should stop fearing hospices. These are not dreams, but reality.

We did have our very own pavilion at the city festival “The Easter Gift” where anyone could not only get their make-up done, but also get to know the Fund's volunteers, try to care for a terminally ill patient under the guidance of Nyuta Federmesser, our founder, and sign up for an introductory meeting for our volunteers. 

  • We had visitors who asked: what is palliative care?
  • Who are volunteers and how much do they get paid?
  • How many hospices does our company have?
  • Therapy dogs and concerts in a hospice - this must be expensive?

It is so cool that we had a chance to answer all these questions.

We also had a chance to explain that, at the last stretch of a life's journey, when one cannot be healed, one can still be helped in a professional manner.

We could explain that volunteers are highly motivated people, which is why they help the Fund free of charge, in their own free time, and in different ways.

We could say that concerts and events which happen in the life of a hospice are free for us and for our patients.

This was an incredible experience for us and a perfect opportunity to tell the public about hospice life, events, and people who turn a hospice into a real home.

 

The spring and the first summer month have been busy for the Moscow hospices: many holidays were celebrated, dozens of concerts and master classes were held, new flowerbeds were made, and, amidst all that, we still had a chance to sit in the shade of the trees and enjoy summer treats and pleasant conversations.  Last but not least, the Center for Palliative Care saw a first wedding in its history.

Many people dream of saying “I will love you until the day I die”, but very few can actually say that it's true.  Anatoly knows that: he is a patient of our hospice. His wife Olga and he share many things: seven children (they had two of them together), eight years of love for each other, a few cats and dogs, and several chemotherapy treatments. 

This spring they got married in the Moscow Center for Palliative Care where Anatoly is staying. A clerk from the Civil Registry Office came to unite them in marriage, the donors gave them a wedding cake, volunteer musicians helped set the mood for the event, and their friends and children were there to congratulate them and celebrate together.

The couple met when Olga (a charity foundation's director) were looking for potential donors, but instead found someone who needed help. When she met Anatoly, he needed a cancer surgery. Later, they faced a long and complex treatment and remission, when two of their children were born. Recently, the disease returned, and Anatoly needed palliative care.

“If not for palliative care, we wouldn't have come to a conclusion that we need to keep living, get married, and have a celebration. The thing is: what's the point of grieving? We enjoy every new day that comes and think about other things we'd like to do.  We are extremely grateful to the doctors and the whole team for helping us to get back on our feet. They gave us a chance to not think about the difficult part of the disease. Instead, we can focus on the joy: the joy of having each other, loving each other, and living,” says Olga.

One, two, three -- the bride tossed the flowers to the crowd of girls of all ages, among them, patients in wheelchairs, nurses, and volunteers. Of course, later there was champagne, appetizers, dancing, and jazz music.  Anatoly cannot stand on his feet anymore, let alone dance with his wife, but his hands kept moving non-stop, following the music. It does no matter how much time one has left: there is still enough time to do all that we can.

 

 

Our foundation has been spending the average of 258791$ to cover for the following needs of Moscow hospices:

01.03.18 through 30.06.18

Medical equipment – $28663

Meals – $2252

Financial support to hospice staff – $112435

Coordinators’ work – $110027

Other expenses - $5414

 

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