Marta is a 9 year old patient with multiple health problems (ischemic encephalopathy, epilepsy, spacstic tetra paresis, microcephaly, cleft palate, severe psychomotor retardation and glaucoma) under the care of the Bucharest paediatric team. I visited her a month ago with a home-care nurse and went back a month later for a second visit. I was so encouraged to see how much difference the hospice had been able to make.
Marta’s father left home because he could not cope with having a sick child and her mother is unemployed as she needs to be a full time carer. She has a sister, Maria, who is 7 years old – a bright child who is doing well at school although she suffers from not having money to buy books or go on school trips.
The family lives in the tiniest studio flat I have ever seen – so tiny in fact that the oven is located in the shower! The flat is owned by a cousin who is currently living abroad but is about to return to Romania and needs the flat back. Their only option would be to move to the countryside, 30 kilometres from Bucharest, and this would be disastrous for Marta as she needs to be near to medical services when she has a crisis.
The hospice is able to offer the family a complex range of services. Our paediatric home-care team visits regularly to provide medical care, our social workers help with practical matters and our physiotherapist provides sessions both in the home and at the hospice. Our sensory room is particularly beneficial to Marta as she is blind and severely disabled. The mother is able to attend training sessions for carers in the hospice and this way she gets to meet other parents of sick children. The whole family is able to attend activities in our new day centre and they particularly enjoyed meeting a famous TV presenter at the children’s Christmas party. We will also able to offer the family temporary accommodation in the family unit at the hospice so that they have somewhere to stay whilst our social workers find a more permanent solution.
Hospice has been able to change the world for this family and there are many more touching examples of the difference that having the new hospice has made. I and the whole team are so grateful to the supporters of Hospices of Hope for helping to make this all possible.
CEO, Hospice Casa Sperantei