Support 169 families with terminally ill children

By tradition, we share with you the stories that happened in our children's program thanks to your support.

In January, our wards of families with seriously ill children across Russia continued to receive Christmas gifts. Moms and dads wrote to us: "We came from the hospital — and we were waiting for gifts at home:)". "The child is delighted with the bear-sleeping with him in his arms. We love you!". "When you lack friends, toys placed around your son raise your mood."

We continued to monitor the development of the situation with the purchase of unregistered medicines for children and issued several memos on how to get medical products and unregistered medicines (klobazam, diazepam, phenobarbital, midazolam) from the state.

Also, thanks to the advice of our lawyers, several other families received equipment from the state.

In early February, the hospital of the children's hospice "House with a lighthouse" received a license for medical activities! Officially, the hospital — a four-story and unrealistically beautiful house on Dolgorukovskaya, 30 opened in the fall of 2019. But without a license, the hospital could not accept terminally ill children and their parents. Only the field service worked, which provides assistance to about 850 families per year. Already in mid-February, the first patients will arrive in the cozy cabins-wards of the hospital. We are very happy for our colleagues and are happy that this joint project is entering a new stage and is starting its work with those for whom it was conceived – with seriously ill children.

Spring this year began not with traditional clean-up days, picnics and walks, but with a wariness around the situation with the coronavirus and the subsequent period of quarantine.

Families with seriously ill children live in isolation most of the time and know better than anyone how to arrange a comfortable life at home and make every day in the same space happy and different from the previous one, how to occupy the child, how to come up with some new activities and games. For many parents, this period was particularly difficult – we tried to share our knowledge with those who might need it now.

Here you can see how our wards spend their time in quarantine:

Svetlana from Krasnodar, mother of six-year-old Sonya with CNS malformation:

We decided that the quarantine should not be wasted. We will spend it as on January 1 - in felting, cooking and eating Goodies, watching good movies, gadgets, books.... And we will definitely bake a cake — our signature "Napoleon". Then we'll make a nice Cup of tea, cut off a big slice of cake — as much as our conscience will allow-and savor it. Our main task now is not to get sick. And only then, when the World recovers, we will solve the accumulated issues. But it will be later, and for now we are lazy for fun!

Yulia from Omsk, mother of five-year-old Zlata with a degenerative CNS disease:

In self-isolation mode, we decided to learn how to weave braids — because in normal times, there is not enough time for this. We also have a paper collection of Lol dolls. Printed, colored, and cut out. No matter how sad the situation is, it's great to be at home as a family.

Natalia from Ryazan, mother of five-year-old Lera with Aikardi Syndrome:

Lera and I like to spend time like this: my daughter watches cartoons, and I embroider beads or paint pictures by numbers. We are together-and everyone is busy with their own business. I spent two weeks embroidering a pair of swans. I hung them on the wall, and now Lera and I are admiring them.

Take care of yourselves.

Below is the data on allocated charitable expenditures this time:

01.01.20 through 31.03.20

Medical equipment and its service … $19223

Equipment consumables…………..... $57334

Special nutrition……………............... $57045

Financial help to families …............... $10822

Medicaments ……………................... $1058

Transport services …………….......... $8219

Funeral services ……………............. $2509

Work of team of this project (coordinators, psychologist, lawyer and etc.) …....…………….......……………........ $57064

Total …………….............…………….$213274

There are hospices that are unlucky. They stand in the background, as if they were hidden — not to see and not to know.
The first children's hospice on Chertanovskaya street is just like this. Not everyone who lives in the neighborhood knows that the only state hospice for children in Moscow is nearby.

More than 20 children live in the hospice — "parents" and those who do not have a mother and father.

In addition to medical staff, the children are assisted by the coordinator of the Vera Foundation, Sofia, and two nannies. And there are almost no volunteers.

Here's Kostya-he's a nanny.

Kostya says that he "works as an Elevator". That is, it carries children back and forth (previously, the building was a children's Home, and elevators were not provided). Then he laughs and lists:

"I'm having a racing wheelchair on the site! Children are very happy that you can quickly move down the hill. There are children who react to something special: for example, you laugh — and the child also begins to smile. Some children like tactile sensations: you bring sand, the child dips his hands in it and sticks out for two hours in the sand, which we then sweep out of all corners. You can turn on cartoons, sit on the Ottoman — and watch together."

During the day, Kostya manages to spend time with only 5-6 children. When asked how another person — a volunteer — could help, Kostya answers:

"Honestly? A volunteer can help with anything. You can just be with the child next to you — and there will be no emptiness."

Ira, the nanny, tells:

"One day a volunteer asked:" What tasks will you set for me?“ This is jarring, because here the situation itself sets tasks: just be attentive and observant.

The day is built around the child. Say Hello to everyone in the morning. Treat the ward's mother in the tea corner with sweets. Taking a child in your arms is the best thing to do on a physical level. Call the nurse and say, " I think the baby has a fever." You can bring a box with nonsense like a bell and tinsel — this is the only joy available to a child with poor tactile and sound experience.
Oh, Yes, you can click! Someone stops and listens.
Sing a lullaby. Ask "what did you dream?"- and most answer this question "probably something good, probably a soft bear or a horse..."".

On the question of what is more important, the Ira answers:
"You can just be with the child next to you."

There is nothing heroic or beyond genius in the help list. But no volunteers come to the hospice. They don't think they can do anything. But if you can click, that's a lot.

These three months we have been looking for volunteers who would fill the children's hospice on Chertanovskaya with life – now there are more volunteers, and the life of the hospice has become more joyful.

In December, we launched the project "Find the Pink lady", in which we talked about the employees of the project "Help for children". We want to share with you a few stories of our colleagues.
"In 2017, the Foundation received a call — the thin voice of a very young girl sounded in the phone. This was Maria from Rostov-on-don, the mother of the boy Arslan — he was only a few months old, he was in the intensive care unit.

Due to an incurable disease, Arslan breathed using an artificial lung ventilation (ventilator). The mother was given a choice: to send her son to the children's Home (since only there in Rostov was palliative care for children), or he will be transferred from Rostov to Taganrog, where there are free beds in the intensive care unit.

But both options were not acceptable to Maria.

Together, we managed to get the child discharged home. Arslan met the New year at home, with a Christmas tree and gifts, and most importantly - with his family.
I explained to my mother how to get medicines, specialized medical nutrition, wheelchairs, and necessary medical devices from the state.

My mother not only achieved everything for her son, but also became a member of the Board of the regional branch of the all-Russian organization of parents of disabled children (VORDI) in the Rostov region.

Now it is actively working on the development of the system of palliative care for children, interacting with the leadership of the region, the Ministry of health of the Rostov region, and local NGOs.
She made sure that the palliative Department at the children's Home was transferred to the regional hospital — the decision has already been made, in the near future the Department will be repaired.

Maria supports other mothers of seriously ill children and shares her experience and knowledge with them.

Arslan is now living at home, celebrate the holidays, walking and developing. He doesn't spend his days in intensive care, as he might, but with his mother. For a child, the most important thing is to be with someone who loves you."

We thought that on the day of the lawyer, there must be a story from Anna, a lawyer for the "Help for children" project of the Vera Fund. It teaches parents not to be afraid of bureaucracy, to believe in their rights and not to give up-even if it seems that the forces are no longer left.

"Usually parents contact the coordinator when they are confused. After all, when they learn about the incurable disease of a child, they do not know what to do next, where to look for help.

When the Foundation begins to help, they feel that they are no longer alone. I can be called with any question-sometimes to discuss the necessary equipment, food or supplies for the child. And sometimes-when it's scary and you just need to feel the shoulder and support.

We try to make life easier for these families, so that they can finally think about life, about walking, about playing games, and about the child's childhood.

It happens that a second sick child is born in the family. This is difficult to accept, but in such cases, it saves knowing who to turn to for help. Families already understand that, despite the disease, the child can have a childhood.

Now I'm just supporting parents who have a child born again with an organic disease. We promptly sent the necessary equipment for the girl.
She will live at home with her family. And we will be there."

This is a story from Kira, coordinator of the "Help for children" project of the Vera Fund. Kira is in touch with 50 families from different parts of the country — morning, afternoon, evening and night.

Thanks to your support, we can work and help families with terminally ill children. Thanks!

Below is the data on allocated charitable expenditures this time:

01.10.19 through 31.12.19

Medical equipment and its service … $266614

Equipment consumables…………..... $100195

Special nutrition……………............... $87754

Financial help to families …............... $10466

Medicaments ……………................... $703

Transport services …………….......... $11180

Funeral services ……………............. $1309

Work of team of this project (coordinators, psychologist, lawyer and etc.) …....…………….......……………........ $86023

Total …………….............…………….$564244