My name is Carina, and I’m Candelaria´s mother.  I want to share what Paediatric Palliative Care means to us. Truly, from the bottom of my heart, we have so much to be grateful for. They’ve helped us tremendously throughout this journey, which is not easy.

Candelaria was an extreme premature infant who has faced many health complications since birth and still does to this day. Candelaria has a severe disability, which makes her completely dependent. I am the one who takes care of all her needs — every aspect of her care. 

Every time I talk about this, I feel a flood of emotions, because this is a very tough reality. We owe so much to the entire medical team, and especially to the Paediatric Palliative Care team. They are very special professionals. There’s something different about them, because they stand by families during the most difficult times. 

In the most complex situations we’ve had to face, they were there — always supporting us, not only medically, but also humanely. They have that extra spark, that “plus,” that sets them apart. Their way of walking with us goes beyond treatment — there’s a deep sense of humanity that has been essential for us. 

Even now, when things aren’t as critical as before, Candelaria still needs full support — and they are still here. They remain attentive, checking, asking how we’re doing, looking for ways they can help. They’ve come into our home during very difficult moments, and that was key. 

Their presence was so important for us as parents, but also for the entire family. They helped us clearly understand and explain Candelaria’s real situation — something that was hard for us to accept and communicate. Having their support during that time marked a turning point. Because they didn’t just guide us as mom and dad — they helped us find the words to explain things to the rest of the family. 

As a family, their support has been — and continues to be — fundamental. And I imagine it’s the same for many other families. Because palliative care professionals don’t just see the patient — they understand the family dynamics, the context. It’s not just about going to a medical appointment and that’s it. They’re there to help, guide, and walk alongside you. They show us how to move forward, where to look for solutions. 

So, from our side, we only have words of gratitude. 

And if you were to ask me what else could be done from a policy perspective, I’d say that more resources are needed so that other families going through difficult situations like ours can have access to this kind of professional team. Because they are essential. They truly open doors. They show us possibilities we never even knew existed. In our case, we knew nothing about disability — and thanks to them, we discovered options, paths, and support.  I just wish politicians would put wealth aside for a moment and take a closer look at the real needs of the people.