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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:

Mar 8, 2016

Thank you, and please stay with us

Dear Vera donors,

the months that have passed since this project was launched have been quite busy at our regional program, which supports the terminally ill children and their families all over Russia and which you have helped. 

By now, we have 149 families under care instead of the 38 we started with. Some of these families live in cities with more facilities, others in small villages with hardly any medical care available, but all of them need medical, social, legal and phsycological support on regular basis. 

Since August 2015, our program coordinators have made 3036 phone calls and written 3125 letters to these families. 

The expences we made included:

- purchase and maintenance of air supply medical ventilators for children with inadiquate ventilation or hypoxia;

- buying  and delivering other medical equipment for in-home usage;

- enteral and other medical nutrition for children with disorders that lead to inability to consume food in its regular forms;

- purchase and delivery of certain types of medication; 

- sending our doctors to some families in need of professional consultations at home;

- providing care supply material essential for giving proper care and unaffordable to most families;

- covering ritual services for some of the families who lost their children.

In November 2015 we were actively involved in support project in the Crimea. There was severe electricity shortage in the region and the childrens' hospitals had no heating. We've launched a campaing to buy and send electrical generators to them. This project also drew attention of local aothorities to multiple prolems in the sphere of palliative care, which were then taken into account and are curretnly being solved. 

Finding ways to cultivate palliative care locally may be the most important part of our job, because when in comes to dealing with families in such distress, personal contact is essential. This is why we pay much attention to finding like-minded doctors and coordinators in each region, including them in our work, brigning them together with our ward families and guiding through the engeneering process of hospice care wherever they are. 

We hope that the above information has given you a better picture of what we do. Please, do not hesitate to ask us questions if you have any. And we ask you to let other people know about our cause by sharing this project. The more resources this program attains, the more help we will be able to give. 

With best regards and deep gratitude,

Vera Hospice Charity Fund 

Dec 9, 2015

December news update

Merry Charitable X-mas!
Merry Charitable X-mas!

Dear friend of Vera Hospice Charity Fund,

last week we celebrated our foundation's 9th birthday and made a wish - it was for our patients and their families to be able to receieve all the care they need in full and on time, no matter what. 

With holiday season coming up, it is especially important to make sure they are comrforted and comfortable. Our annual tradition is to collect all the wishes of everyone who is currently under Vera's care and make sure they come true. That's what we are busy doing right now. That, plus the regular every day work, where we focus on providing the best palliative care our patients can get. 

Also, we are now preparing for our second HappyRun event - where a thousand Santas run together for Vera's hospice for children support prorgam. It is great fun combined with good deeds. All the fees we collect from participants are donated to "Lighthouse Home" children's hospice, the first one to be opened in Moscow. 

In January, we are holding a week long field trip session for familes who had just recently learned their child had an incurable illness. It is very important that they not only learn to care for their child the best way possible, but also to see that life does not end here and that they are not alone.

None of these things we are busy doing this December would have been possible without your effort, whithout you joining together for the good cause. We, the Vera team, would like to thank you for your help and support, for taking time to listen and hear the heartbeat of someone in need.

We wish you a wonderful holiday season, filled with joy and happiness. May all your dreams come true! 

Yours truly,

Vera fund's team 

 
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