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