Support 169 families with terminally ill children

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:

• assessment of the quality of the fund's work;
• dentification of typical problems of families;
• and possible points of growth of the project.

"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:

• special meal 71 988,63$
• financial support 10 054,08$
• medical equipment and its service 110 533,93$
• consumables 55 021,25$
• funeral services 2 301,28$
• transport services 6 233,78$
• stuff salaries 63 823,93$
• other expenses 5 724,76$