Imagine caring for a child with a terminal condition, living in a high rise apartment block with no lift. What would life be like?
Chernobyl Children’s Project (UK) supports families in the Gomel region by providing a wonderful Doctor, two nurses and a psychologist to provide hospice care at home. The team visits families caring for terminally ill children, or children with profound disabilities. This support is crucial. But it’s the simple things like nappies, toiletries and money for food which can make a huge difference.
On the right is 9 year old Ira, who lives with her mum Tania. Ira suffered severe brain damage during birth and has severe learning disabilities. She takes anticonvulsant medication and now has a low haemaglobin count. She has two siblings, 8 year old Dasha and 1 year old Kiril. She is pictured here being examined by our hospice doctor, Irina. Her mother is extremely grateful for the care and support of the hospice team.
This is Artem and his mother. He is 4 years old, but doctors have not been able to diagnose his exact condition. He has severe learning disabilities and little awareness of his surroundings. He is tube fed at home and suffers from regular fits, which are extremely traumtic for his family to see. Artem’s family is large and only his father works, as a taxi driver, enabling his mother to care for him full time. Their daughter has just finished school. They rely on the expertise and emotional support of our team, who are able to offer advice and a shoulder to lean on in difficult times.
This is Nastya and her mum Svetlana. Nastya is almost 5 years old. She has cerebral palsy and severe epilepsy. Her grandmother lives with them. Recently, Nastya’s seizures have become more frequent, and she is desperate need of rectal diazepam.
Dasha is 5. At 1 month old, she developed meningitis. Following this she developed hydrocepalus and she has severe cerebral palsy. There are three other children in the family and they survive on the father’s income alone. Life is a constant struggle for this family, but they always remain positive and Dasha is surrounded by an extremely loving environment.