The past year has tested us all: since February 2022 we have seen how easily confidence in the future crumbles; how familiar life is turned upside down; how fragile human life is.
But at the same time we felt how strong and invaluable the bond between people is. And our invisible, but so strong connection with you.
This year in the life of the Foundation there were many unforeseen difficulties: the price of medical equipment and special food was skyrocketing, due to the spring collapse of the payment systems we lost hundreds of monthly subscriptions, representatives of large international companies, who had been supporting us for years, were leaving the Russian market.
We were very afraid that we would fail, that we would let down those who needed us - seriously ill children and adults all over the country. But, friends, we made it. We did it thanks to the support of our donors and supporters. Unfortunately, we don't get the donations you make at GlobalGiving yet, but we believe that one day it will happen again.
Together we managed to help young patients of 30 palliative care institutions and 260 families with terminally ill children all over Russia, to pass on our knowledge to hundreds of doctors and NGO workers. And to save, probably, the most fragile thing - the right to human dignity to the very end.
Below are a few stories of those whom we helped during this time:
Xenia recently turned 7 years old. She was really looking forward to the new stroller and even told her parents: "I wish it would arrive by her birthday!", and her mother said that we shouldn't get our hopes up. First the specialists would choose the equipment, then the purchase, then the delivery... But a miracle happened and the stroller arrived right before the girl's birthday. The parents kept the secret and made a surprise for Xenia. The birthday was a success - our little girl is excited, she is learning how to drive the stroller and according to her parents she is already able to park the car pretty dashingly. The electric wheelchair is very comfortable: the backrest can be switched into a half lying position which is convenient for a child with muscular problems. And it is also very important that this equipment is "for growing up", so it will serve Xenia for a long time.
Roma is 5 years old and has had spinal muscular atrophy type 1 since birth. This is a disease in which a child gradually becomes weaker and stops working all his muscles. The boy doesn't breathe on his own, but his dependence on a ventilator and physical limitation is not an obstacle for a rich life and a happy childhood! Roma with his family are real travelers! They traveled all over the country and even went to the sea! A trunk full of equipment, food, and a stroller are always with them. Unfortunately, Roma doesn't walk in the winter, which means he has only 6 months of warmth to travel and visit his grandparents in the neighboring towns. Every trip out of the house develops the boy, and for the family it is a real escape from routine and sad thoughts.
While Roma was small, they took him in a special cradle in the car. But the boy is growing and he barely fits into the back seat of the car, it is uncomfortable and simply dangerous. The foundation bought a special car seat for Roma with body fixation and a swivel platform.
During period June-December 2022 we've spend 616048,50$ for our program including:
Seriously ill children from the regions of Russia are not to blame for the war situation that began this year. Starting in February 2022, the Foundation team had to remain calm and continue to help the families of our charges. In March 2022 the special equipment and food price began to rise rapidly and difficulties with supplies started. So then we decided to start urgent purchases so as not to leave people without help.
It was important for us to have time to buy supplies of the essentials for the children in the regions months ahead. We have 260 children under our care all over the country. And this purchase was a huge support and an opportunity to give their parents some confidence.
Some of the important purchases we managed to make before the prices went up. And now we have dozens of boxes with aspirators, pulse oximeters, tracheostomies, and batteries for ventilators. It's a great relief to know that in an unforeseen economic circumstance, we have a backup parachute to fall back on.
Our Children's Support Project team processed and continues to process dozens of invoices every day, take equipment into storage, and distribute important purchases to families. Coordinators keep their hand on the pulse, trying to reassure and support the parents. And most importantly, they don't leave them alone with their fears. Thanks to you.
Below are a few stories of those whom we helped during this time:
Said is a boy of 8 years old from Kazan. He has cerebral palsy: he was born with severe organic lesions of the nervous system. Said does not walk or speak, and he cannot swallow as well. His mother feeds him through a tracheostomy (a special device with which chopped food goes straight to the stomach), but saliva and phlegm are constantly excreted and can flow into places where they don't belong - for example, the trachea, and this will certainly cause pneumonia. The Vera Foundation purchased a portable vacuum aspirator for Said's family, and now the boy can safely walk and go to the doctors.
Lera, 13, is from a distant village in Khabarovsk Krai, she has no parents and she lives with her grandmother. The girl has a complex and incurable genetic disease - mucopolysaccharidosis (type 3A). Until a certain age a child with this diagnosis develops almost normally, except that she looks larger than her peers and has very thick eyebrows. Here Lera went to kindergarten, could read and count, loved going to the park, animators and cakes. At age 6, after two complicated ENT-operations and undergoing anesthesia, the girl's skills gradually faded. Lera does not eat by herself, since she cannot swallow, and she constantly vomits because of reflux. The foundation purchased a special medical bed for Lera so that she could not only look at the ceiling, but could see the room sitting up, watch cartoons, and play with toys for a while.
During period January-June 22 we've spend 850 620,70$ for our program including:
In 2021, the project "Help for Children" helped 260 children from all over Russia. These are the children we helped pick up from the intensive care unit, and children who need constant palliative support, and there is no children's palliative center nearby.
From a social point of view, a serious illness of 1 adult affects 10 people, and a serious illness of 1 child affects 30. Close relatives, distant relatives, friends, teachers, doctors and social services.
Comprehensive care is required: from therapeutic nutrition to special rehabilitation equipment. For example, the cheapest products — an aspiration catheter (1,5$) and an anesthetic mask (5$) — are needed so as not to choke on sputum and be able to breathe. The mask is included in the mandatory safety kit, with the help of it and the ambulance bag, the child can be "pumped" until the ambulance arrives. Cheap, but vital. And the most expensive product is a transformer stroller—step walker (11800$). It's about the quality of life.
One of the most interesting cases is the purchase of a crawler lift for Michel from St. Petersburg. He lives with his parents on the 4th floor in a building without an elevator. Every going out was a challenge. Mom had to carry Michel in her arms along with medical equipment, without which he would not be able to live.
The Vera Foundation bought such a lift for the first time. Its peculiarity is that it is versatile and suitable for various models of strollers: mechanical, active, children's strollers, electric wheelchairs.
Now it's easier for Misha to go down from the 4th floor.
During period October-December we've spend 572 874,50$ for our program including:
The ward of the project "Help for Children" Georgy received an unregistered anticonvulsant drug "Urbanil" (7 packs of 30 tablets - this is enough for 3 months). Since February 2021, Georgy's mother Yana has been actively working with Anya Povalikhina, the project's lawyer, to obtain free medicines and specialized nutrition.
"Appeals were sent from the fund to Federal Service for Surveillance in Healthcare, which helped speed up the process. But Yana is fighting to provide with everything necessary not only her son, but also other children of the region who need palliative care. Yana wants all children in need of specialized nutrition to be provided to them by the decision of the medical commission at the state expense. So far, this is happening only thanks to the benefactors helping the children's hospice, which recently opened at the regional hospital,"- says Anna Povalikhina, lawyer of the project "Help for Children" of the Vera Foundation.
On May 18, the foundation's office hosted a presentation of the system “Pointer”, which allows you to control a computer with a glance. It is intended for fully or partially immobilized patients — including children. You can start using the Pointer at the age of 6-7 years.
In May, the preparation for the campaign "Children instead of flowers" began. This year we decided to tell the participants not only the stories of those children whom we will be able to help thanks to the campaign "Children instead of flowers" - 2021. But we have also prepared stories about children whom the foundation has been helping for many years. So the participants were able to see how their annual support of the campaign changes the life of an entire family.
For example, the Vera Foundation has been helping Oleg from Mordovia for almost 7 years. He has the first type of spinal muscular atrophy (SMA). This is one of the most severe types of this disease. With the help of benefactors over the years, we bought Oleg two strollers, a corset, a cough suppressant and consumables for it. Oleg dreams of becoming a blogger and is fond of racing, knows all the traffic signs and teaches his grandfather how to drive a car correctly.
In April, the project "Help for Children" conducted a survey of families that the Vera Foundation supports on an ongoing basis. 121 families answered the questionnaire questions.
The main objectives of the survey:
"The stories of our ward families are parts of a puzzle that sometimes needs to be put together into a big picture. We conducted a large survey of families - about their problems, relations with the foundation and palliative care in the regions. May I say there were a lot of surprising opinions? Not much. The problems of families are generally known to us, the growth points of the project are rather predictable, and we feel a warm attitude towards the fund. Most of all, I was struck by how few families assess received palliative care on the ground. 57% of respondents receive it. We meet these "no money", "you're not supposed to", "we don't know what to do with you", "we don't know how to set up equipment" in the life of the wards almost every day. But in general, it seemed that the "birth" of palliative care for children in the regions over the previous two years still happened. It turned out that it seemed. Many have noted that there is still no palliative care service, and if there is, then formally, the changes are slow" - says Olya Filippova, senior coordinator of the project "Help for Children".
The most important and exciting issue for the coordinators was the section "Wishes for the quality of the coordinator's work".
Here are some reviews:
"The work of the Foundation is always at a high level — caring, the desire to help, the speed of delivery of consumables. We gratefully accept help. Thank you for your kindness. Without your help, we would not have been able to take Nikusha home."
"We have a very good coordinator now. She solves all our problems, and the Foundation helps us a lot! Thank you very much! Sometimes there is no time to leave the house, and you send Vlad all the consumables he needs. It is very important that everything is selected individually, because there are features for which specific positions are suitable. And we don't have anything like that in the city."
During period April-June we've spend 325 681,64$ for our program including:
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