Personal opinion

When parents receive the diagnosis there are so many reactions, one for each member of the family, yet everyone, at some point, is hit by the following doubts:

  • What will happen now?
  • What are we going to do?
  • How are we going to care for our child now?
  • Who is going to help us?

I read on a webpage something along these lines:

“Imagine that one day you are laughing and playing, imagine the next day you can’t walk, imagine the next day you can’t speak, after that you can’t smile… now imagine you are 3 years old…”

This is our children’s reality, living like Izas who became a prisoner in her own body.

How do you prepare yourself for it? How do you confront it? How do you know if your child is in pain when they can’t even communicate it with facial expressions?

Palliative care is fundamental because it is high quality care – and I stress ‘quality’ – for many reasons: because they are children and there is nothing more awful than seeing a child suffer; because there is no greater loss than the death of a child; because perhaps there are siblings that are affected. But above all, for them, for the children.

Can any palliative care unit help? For us, Izas’ parents, our answer is no, which we give with a conviction bred by experience.

Izas had a team specialized in paediatric palliative care working in coordination with specialists, oncologists, neurologists, gastroenterologist…It was a multidisciplinary paediatric team.

Don’t hesitate to contact us if you have any questions. This website deals with Gliomatosis but we are aware that there are other very aggressive brain tumours. We are here for you.