Feb 24, 2017

Let little Danya breathe!

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!

Nov 23, 2016

Some important numbers

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! 


Attachments:
Jul 19, 2016

See how your support changes lives

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".

Links:

 
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