Barcelona parents Berta and Guille are calling for more specialised palliative care centres after their son Teo spent six weeks with a rare disease. Their case has put a spotlight on the need for home-like hospital spaces in the city and across Spain.
The couple, who live in the Raval district of Barcelona, welcomed Teo after a long wait. He was born with CHARGE syndrome, a rare condition that affects one in every 15,000 babies. In his first week, he suffered a respiratory arrest and was taken into intensive care at Hospital Sant Joan de Déu.
Berta and Guille described their first days in the ICU as an “infernal sequence”. They were placed in the “elephants’ section”, the area for the most seriously ill babies, and said they were told their newborn son would not live long.
That experience led them to support La Casa de Sofia, a Barcelona centre for intermediate and palliative care for children with chronic illnesses. The centre offers 24-hour support from paediatricians, nurses, physiotherapists, social workers and psychologists, with 15 rooms designed to feel like small homes.
The parents say this kind of setting gives families more privacy, less noise and a chance to live more normally with their child. They also point to the centre’s garden, shared spaces and the option to bring in personal furniture, which they say helps families create memories rather than just get through a crisis.
La Casa de Sofia is currently the only centre of its kind in Spain and is described as a pioneer in the European Union. Similar projects are being prepared at Hospital de Sant Pau in Barcelona and in Madrid, but Berta and Guille say wider access still depends on real funding and agreements, not just political promises. For more local coverage on health and community issues, see Community and Sport.
They argue that access to this kind of care is a constitutional duty under Article 39, which protects the rights of children and families. As they put it, all children like Teo deserve the same dignity and support.
Originally published by El País Barcelona. Read original article.
