Support 169 families with terminally ill children

“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.

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.