40th day of the Russian invasion of Ukraine

Categories: Care, Featured, and Opinion.

Emotions are beyond the scale of human perception from all the passionate people in the world.

Many lives have been sacrificed daily. Our soldiers, civilians, and children have fallen victim. People have been subjected to famine, torture, genocide – everything to ensure that there are no Ukrainian people on the map of Ukraine and the land belongs to Russia. But it is not for the Russian “brothers” to decide. It is all in the will of God!

I would like to say a few words about paediatric palliative care. Before the war, many Ukrainian parental organisations such as “Parents for Early Intervention”, “Myo-life”, “Children with Spinal Muscular Amyotrophy”, “Debra-Ukraine”, and many others actively sought the rights for their children to medical and palliative care. They worked closely with international partners, imported new technologies into the country, and issued international management recommendations. Despite the fact that diseases needing palliative care are considered rare, there are a lot of children with these diseases. In Kharkiv region alone, more than 5,000 of them are registered.

Our Centre for Palliative Medicine of Kharkiv National Medical University, together with other team-associated specialists, began active consultations for families of children with Duchenne Muscular Dystrophy offline and online from different regions in Ukraine. The Dutch public organization Parents had joined in supporting the parents of children with special needs, in particular through our centre with parents of “Myo-life”. During the war, there are no field activities for the partner organizations. Many parents took their children away from the hot spots, but many remained.

We thank people from other countries, our international medical and palliative care community, who have been not only a roof for our children needing palliative care but also provided them with expensive treatment. We are still left with requests for expensive medicines, devices for home non-invasive ventilation, special clinical nutrition, and a virtual absence of specialised medical, social, and palliative care. They were replaced by a small fraction of volunteer help.

George on non-invasive ventilation at home

The family of a teenager George with Duchenne Muscular Dystrophy consists of a mother and a bedridden grandmother. Three months ago, George’s respiratory function began to deteriorate, and we set up non-invasive ventilation at home. He was treated by medical specialists, a physical therapist and he was provided with palliative care. He weighs over 100 kg. The respiratory specialists and mobile team are not available. The family lives on the 10th floor of a multi-story building. His mom is physically unable to transfer George quickly to a wheelchair with his grandmother and quickly descend into the cellar during air and rocket bombardments. George, we know how terrible and difficult it is for you! We are praying for you! As soon as there is an opportunity to be near you, we will certainly do it.


We would like to let other families know; that you are not abandoned. In cooperation with our colleagues from ICPCN, we will find ways to support, just live!

And finally, another huge wound in the heart on the 41st day of the war – the unprecedented torture of our civilians, women, children in Bucha, Irpin, Hostomel, the genocide in Mariupol no tears, no words #StopWarinUkraine

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