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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

Over the past three months we have rendered support to 204 families with terminally ill children all over Russia. The total amount of charitable expenditures for the period is $342,682.00 which we used to provide for the needs of those families. We spent it on medical equipment, consumables, care products and special nutrition.

We often receive grateful letters from parents of the children we’ve been supporting. Whatever we have managed to do for them became possible only because of your help and your donations. We’d like to share one story with you. It is a letter from the family mom whose daughter Polina has been under VERA's care:

«We spent our summer well and used every opportunity for nature walks. Of course, sometimes it was raining and couple of times the electricity went down because of strong severe thunderstorms. In such cases we used electric generator which helped us calmly wait for the good weather to come, or till the bulk power supply is on. Also we travelled to the countryside house where Polina’s cousins played with her outside from morning till evening. This was a really great experience for us, since the condition of Polina's health often gets in the way of her spending time with other children. A few days ago we took Polina to Altai fields full of sunflowers to show her this yellow beauty. My husband and I always feel happy when we can take Polina to the countryside and spend time together in the nature.

Our dear helpers, we received the parcel from you. There was the equipment we really needed – battery operated medical aspirator. This equipment is highly important for us, because it’s portable, so we can use it everywhere and be sure that now in case of a blackout we have a reliable helper. It’s really scary when your child is dependent on medical equipment, but we always try to stay positive and lift each other's spirits».

It’s just one letter among many we at Vera foundation receive each day. All these words of sincere gratitude are addressed to you, dear donors, to people without whom we would not be able to provide regular support to the terminally ill children and their families in all regions of vast Russia.

Below is the data on allocated charitable expenditures this summer:

01.06.17 through 31.08.17

Medical equipment and its service … $152,075
Equipment consumables…………..... $49,883
Special nutrition……………............... $41,848
Financial help to families …............... $32,267
Transport services …………….......... $2,571
Funeral services ……………............. $5,867
Work of team of this project (coordinators, psychologist, lawyer and etc.) …....…………….......……………........ $55,321
Other expenses …………….............. $2,850


With appreciation and warm regards,

Vera team

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Dear Vera foundation donor, 

 Over the past three months we have rendered help to 220 terminally ill children all over Russia, and their families.

 The total amount of expenditures for the period is $368,421, which we used to provide for the needs of children with severe and incurable genetic, neurological, oncologic and other conditions.

 Below are some examples of what families with terminally ill children may need and are most likely unable to afford and what Vera is there to help them obtain.

 

Oxygen concentrator…………$90

Coughtaker……………………$8700

Medical ventilator………….…$6200

Equipment consumables…….$14900 annually

Special nutrition……………....$5200 annually

Medication…………………….$2100 annually

Verticalizer………………….…$1800

Orthopedic stroller…………...$6200

Functional medical bed……...$2200

Portable aspirator……..……..$5200

Every day we receive thank you letters from mothers and fathers of the children we’ve been supporting. Those words of gratitude are addressed to you too. We’d like to share one of them with you:

“On behalf of our family I want to express our deepest gratitude to you! With your help, our life has become easier. You’ve brought relief into it. Something we stopped hoping for a while ago. When Vera helped us get a good pulse oximeter and a portable aspirator, it wasn’t just my children who started breathing lighter, it was me too. Since my husband works all the time, I am busy taking care of children 24/7. Whenever we needed to go out, this would turn into heavy work for me: dressing the children, taking them it in turn to the car, and then carrying the heavy and large aspirator (not to mention the voltage converter). I often found myself breathless after this venture. Once we got a portable aspirator, my life has changed”. the family Mom

Please, know that none of this would be possible without your help and that the only way for us to be able to respond to the needs of these children and make sure their quality of life is provided at the best level possible is with your donations.

With gratitude and warm regards,

Vera team

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Less than three years ago, in October 2014, a boy was born to a family in Vladimir. They named him Danya. The boy turned out to be the one in every 1,000 babies who are diagnosed with Obstructive hydrocephalus -  a condition in which there is an abnormal accumulation of cerebrospinal fluid  within the brain.

Children like Danya experience lifelong complex medical issues and need ceaseless care. It is a 24-hour job for the boy’s parents, one that requires skill and precision, no matter how emotional the caregiver may get on the inside. It also requires money, too much of it for a family where at least one parent needs to be by the son’s side day and night.

Vera Foundation has been supporting Danya and his family, like many others in Russia in need for proper palliative care for their terminally ill children. Right now, to be able to breathe without interruption Danya needs the assistance of a medical aspirator and a tracheostomy.

The money raised with your help through this project on GlobalGiving during the last three months will be spent to purchase the mechanical aspirator and tracheostomies.

Good night sleep and some rest may sound small to some people, but to Danya and his Mom they are treasures. They are the promise of a better life quality and the long-wanted relief. These treasures became reality thanks to your help.

We thank you for donating to the cause of supporting terminally ill children in Russia through Vera Foundation and making little big miracles happen!

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Dear Vera foundation donor, 

You have generously contributed to the support of the most vulnerable and needy category of people living in Russia - the terminally ill children and their families from regions other than Moscow. 

We are working hard to make sure that the money you donate is spent most efficiently and that we've made sure that the needs of those under Vera's ward are met every day and properly. 

Within this project, we have already published several reports. The one we present today is meant to give you a clearer picture on what the volume of work and help is - in terms of numbers. Attached is the statistics report for the current state of affairs in children’s' regional support program. 

Everything we do to make sure that the terminally ill children and their families are not left without support - we can do because you have been helping. Thank you! 


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Arseny and Miron, photo by Anna
Arseny and Miron, photo by Anna

Dear Vera Foudation's donor,

over the last 3 months we have spend the total 32,446$ within the support program for families with termonally ill children who live in distant regions of Russia. 

The funds we raised with your help via GlobalGiving platform were used to support Anna's family in Omsk. Noone can tell you how much this help means to htem like Anna herself, which is why we are sending this letter she wrote, addressed to all Vera's donors and filled with deep gratitude: 

“I guess what I am trying to say with this letter is that our family cannot imagine itself without the support of Vera Foundation and its donors.

My name is Anna, I am the mother of two boys: Arseny (7) and Miron (5). Both my sons are severely ill. They have this really rare disease called Tay-Sachs ganglioside or GM2. It is a genetic disorder, which has been thoroughly studied by specialist but still has no cure. The problem is really only one ferment that’s missing, but because it isn’t there, the toxins in the body cannot be processed properly. Instead, they are accumulated in nervous cells and thus are slowly destroying the brain. Eventfully the child loses all the skills he or she once had. To know that this is what’s happening to your kids every minute is not easy. But we try to cherish what we have and look ahead with hope for the better.

Arseny and Miron are paralyzed now. They take food through gastrostomy and breathe via tracheostomy. Their lives are entirely dependent of tubes, mechanisms, special nutrition and constant care. They no longer can see, but still hear. They can feel my touch.

Vera Fund was there for us back when my sons could still move and enjoy things other than music. I can remember how happy it would make them to receive Vera’s gifts. Recently Vera Fund organized for an exert resuscitation specialist from Moscow to come all the way to Omsk where we live, to thoroughly examine the boys and make up an individual support program for each. Then they organize the purchase of all the equipment and other items, which were needed. Thanks to this, we now have every necessary appliance to provide for the best possible care, consumables and special nutrition.

Vera’s coordinators are our true teammates and practically family. I know for sure that without the support of Vera and its’ donors there would have been much more misery and despair and a lot less hope and peace in our lives.

Thank you all for your support!

With best regards,

Anna, Vyacheslav, Arseny and Miron".

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About Project Reports

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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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