In the Kyiv region, 2,325 children have incurable diseases and need care for the rest of their lives. Palliative care is designed to help them. However, these data are unofficial: local authorities only "clarify" information on the number of patients.
In 2019, no child in the region received inpatient palliative care. Eight people were treated with opioid analgesics, although persistent pain is one of the main symptoms of incurable diseases. Palliative care in the region can be provided only in two places, which are primarily designed for orphans on. In addition, there is no outpatient palliative care team to counsel at home. Financial assistance from the state to families is often not enough even for special meals.
You can often hear that palliative patients have "special needs", but their parents do not think so. They simply find the strength, means and opportunities every day to fight for a quality life for their children. In this project in collaboration with the LaVita Palliative Care Foundation we show families, who caring for terminally ill children: five families from the Kyiv region are living their usual days during a pandemic.
*The project was created as part of the project "Increasing the role of civil society in ensuring the rights of children in need of palliative care" with the support of the European Union project "Defenseless: how to violate the rights of palliative children outside of Kyiv." The contents of this information material do not necessarily reflect the official position of the European Union. The sole responsibility for the information and views expressed in the material lies with its authors.
EUGENIA & TARAS and their sons: GLEB, NAZAR and OSTAP.
Nazar is eight years old and he is a palliative patiet.